HSCT Warriors: Recent Episodes
Zen Jen Stansbury Koenig
Illuminating the invisibilities of autoimmune disease.
Designed to bring voice to HSCT journeys – highlight the snowflakes (individual experiences) and recognize our superpowers – because we are as unique in our HSCT journey as we are in our experience with autoimmune disease.
Warrior: Richard K. Burt, MDHSCT: pioneerSuperpower: maverick and founder of HSCT for autoimmune diseasesHow do we navigate health with care these days?This conversation with Dr. Richard Burt about his latest books, Kill Switch: The history of how viruses shaped humanity and led to Covid-19 (2025) and Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant (2023) has a wealth of information relevant to anyone battling autoimmune disease, who has experience with HSCT, or interested in learning more about the flow of money and the need for kill switches to protect human interactions and promote ethical accountability within the field of medicine.Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Kill Switch: The history of how viruses shaped humanity and led to COVID-19Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplantAStemCellJourney.com
Warrior: Anthony RamirezAI: caregiver for son with MSHSCT: December 12, 2016Superpower: resilienceTo what extent do you appreciate the journey? What version of yourself do you present to the world?After a concussion landed Anthony in the ER, his diagnosis of multiple sclerosis was not easy to understand, especially when the disease-modifying drugs did not work like other medications. As he dove into research to try to find more answers, he and his mom Cindi (see Episode 107) happened upon a brief mention of Dr. Burt’s research at Northwestern University and committed to learn everything possible about the latest treatments.Tune in to hear more of Anthony’s journey through HSCT and how he is faring now, nearly 9 years post-transplantand learn how her son is doing nearly nine years after undergoing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Ataxia Center, Johns Hopkins
Warrior: Cindi RamirezAI: caregiver for son with MSHSCT: December 12, 2016Superpower: resilienceHow determined are you to find the best care?When her son suffered a concussion at a company picnic, a CT scan revealed a diagnosis of Multiple Sclerosis. Determined to get him the best care, Cindi sought out top-tier treatment at the Cleveland Clinic, but even with disease-modifying therapies, his symptoms continued to progress. After months of research, Cindi came across a webinar discussing stem cell research led by Dr. Burt at Northwestern University, and together they decided to pursue HSCT.Tune in to hear Cindi’s heartfelt journey as both a mother and caregiver, and learn how her son is doing nearly nine years after undergoing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Larry PowaliszAI: Primary Progressive Multiple SclerosisHSCT: May 2022 Superpower: humbled by MSHow dedicated are you to health and wellness? How committed are you to helping people halt autoimmune disease?After Larry’s left hand went numb and he was diagnosed with MS, the only option his neurologist offered was Ocrevus. His research led him to HSCT at Clinica Ruiz. Upon returning home, Larry was inspired to help others gain access to HSCT and he founded a nonprofit organization to help cover the costs, but soon learned that fundraising for HSCT was not enough. He then founded Adia Med, now a publicly traded company to offer HSCT and other treatments to people battling autoimmune diseases.Tune in to learn more about Larry’s journey with HSCT, how he is a guinea pig at Adia, and his dedication to making HSCT more accessible to individuals with autoimmune disease. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources: Adia Med outpatient HSCT clinic in Winter Park, FloridaMS Heal the World nonprofit organizationMS Hope and the Best Bet Diet for MSBrandon Bieber, neurologistAaron Boster, neurologistRichard Burt, Everyday Miracles
Warrior: Ali StrongAI: Multiple SclerosisHSCT: November 2017Superpower: wellnessWhen doctors aren’t able to answer your questions, who do you turn to? Are you someone who strives to find answers? Do you find the present in each day? The beginning of a new season offers the opportunity to check in with Ali and how she is faring, more than seven years post-HSCT. Tune in to learn how HSCT has shifted her symptoms and experience with MS, gain updates on Ali’s health and approach to wellness, and learn how she is focusing her energy these days. Be sure to visit HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, and connect with resources and the HSCT Warriors Inc nonprofit. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, and audio genius Jacob Kinch for sharing his superpowers to edit and produce the audio to make this podcast possible. Find us and subscribe to the HSCT Warriors Podcast on SoundCloud, iTunes, or wherever you find podcasts.It has been great to connect with Warriors worldwide and we would love to hear from you about how the podcast has helped your journey with autoimmune disease… take a moment to connect with us on instagram or share this episode with someone you know that would enjoy listening. In the meantime, we hope you’ll tune in for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Veena KinniAI: Multiple SclerosisHSCT: Cleveland Clinic, 2021Superpower: ability to know inner strengthHow fully do you embrace opportunities to enjoy life? How do you promote a positive mindset? As a trained physician, it was hard for Veena as she transitioned to being a patient after she was diagnosed with multiple sclerosis in December of 2011. She began on a disease-modifying therapy that she paused in order to get pregnant, though soon after delivering her daughter, her symptoms flared. Between 2014 and 2020, Veena’s condition continued to deteriorate until 2020 when she visited a neurologist at the Cleveland Clinic who suggested HSCT and embraced the opportunity with an ‘ignorance is bliss’ mindset. While she believes that it halted the progression of her disease, and shows no active lesions on MRI, the procedure and recovery have been challenging for Veena, which she attributes to being in the secondary progressive phase of disease. Tune in to learn more about Veena’s experience, her transition to JC+ during treatment with disease modifying therapy, and why she agrees that pursuing HSCT sooner in the course of the experience with autoimmune disease to avoid lasting damage. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Center for Regnerative BiotherapeuticsVinna Kinni, MD Multiple Sclerosis Defeater (blog)
To what extent are you able to eliminate stress from your life? Do you believe you can achieve whatever you put your mind to? To what extent are you aware of treatment options?Despite noticing some symptoms that interfered with walking and mobility, Janet postponed seeing doctors until after she retired from being a police officer. While Janet did not find her career to be stressful, she did experience intense stress in her relationships and personal life. Once Janet came down with bouts of hives caused by intense, long-sustained stress, she began taking steps to reduce and eliminate stress from her life. Over time, Janet experienced other stressors and symptoms (like foot drop and optic neuritis) that she was able to explain away at the time they occurred, but upon reflection, realized they were all related to her eventual diagnosis of multiple sclerosis in March of 2020.Tune in to learn more about how Janet explored options for HSCT in the US and Mexico, prepared her body physically for HSCT, developed strong feelings about accessibility to HSCT, found motivation to write a book about her experience and help others, and ended up having a complete reversal of symptoms. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Christian AI: Multiple SclerosisHSCT: 11/3/23 at the Tom Baker Cancer Center in CalgarySuperpower: body awarenessWhat is your capacity for listening to your body? How well do you fare through complications? How comfortable are you with looking inward? After the numbness and tingling in his legs restricted his capacity to walk in the course of just a few weeks, Christian was quickly diagnosed after finding the right doctor who knew what his symptoms were indicating. After cycling through a variety of disease-modifying therapies over the course of seven years, Christian continued relapsing. After the humbling and terrifying experience of being wheelchair-bound for a few months in December of 2022, Christian switched DMTs again and after it didn’t stop new lesions, he was eventually referred for HSCT in Calgary in June of 2023. Tune in to learn more about the circumstances that led Christian to pursue HSCT in Calgary, and how he fared through the myeloablative protocol, including complications and resolutions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Fiona MittenAI: Marburg’s variant of Multiple SclerosisHSCT: 12/29/2011Superpower: living in the momentAre you someone who believes that everything happens for a reason? How many moments do you treasure each day?Diagnosed 18 years ago after being hit by a drunk driver, several symptoms of multiple sclerosis like optic neuritis and paralysis onset and progressed so quickly, it seems Fiona’s experience was extra unique from the start. From bouts of total paralysis that kept her hospitalized for months at a time, to relief from rounds of chemotherapy that had her walking again, to severe withdrawal that led to chemo-induced psychosis, by the time Fiona found her way to HSCT, she was struggling to walk (a requirement to pass the testing in order to qualify for HSCT).Tune in to learn how Fiona became the third person to be transplanted outside of the trials in Calgary, how she fared with HSCT and recovery, and how she is doing twelve-plus years post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Ali StrongAI: Multiple SclerosisHSCT: November 2017Superpower: boundariesAre you someone who feels your emotions? Are you one to choose happiness? Do you find the present in every moment?The beginning of a new season offers the opportunity to check in with Ali and how she is faring, more than six years post-HSCT. Tune in to revisit the struggles with active multiple sclerosis, hear how HSCT has shifted her symptoms and experience with MS, and learn how Ali is focusing her energy these days. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Matt LeFranceAI: Multiple SclerosisHSCT: June-July 2022Superpower: peace of mindHow do you know what to expect? From whom do you seek feedback? How do you decide to take the next step?Diagnosed just after college at the young age of 25 when he experienced double vision and a variety of doctors had a hard time understanding what was going on, Matt was diagnosed after a MRI revealed a lesion on his brain stem. As he pondered what was next, despite feeling as though life was ending when it should be only just beginning, Matt spent time researching his options for treatment before aging out of insurance coverage. Tune in to learn more about Matt’s research efforts, his natural approach to managing MS for thirteen years before HSCT, and how he fared during his time in Puebla at Clinica Ruiz. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Best Bet Diet and MS Hope
Warrior: MikeAI: Multiple SclerosisHSCT: January 17, 2022Superpower: acceptance and graceWhere does kindness hit you? To what extent do you seek grace? How well do you find acceptance? We first met Mike in Season 7, shortly after he found out about HSCT. After battling with insurance and seeking HSCT at different clinics in the United States, Mike considered a variety of factors in his decision to pursue treatment in Monterrey, Mexico. As Mike works to support physical improvements despite spasticity post-transplant and a battle with COVID, he is finding room for his superpowers of acceptance and grace. Tune in to learn more about the ‘hiccups’ that Mike encountered and their resolution, as well as considerations for family and recovery. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Dr. Richard K. BurtAI: halterHSCT: pioneerSuperpowers: vast knowledge, being patient-centric, caring for improvement in quality of life, facilitating clarity through education, and fortitude in human spiritWith gratitude for the additional time to connect with Dr. Richard Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we’re sharing a verbatim transcript of this conversation, the second of two episodes featuring Dr. Burt, on our website, https:HSCTWarriorsPodcast.org
Warrior: Dr. Richard K. BurtAI: HalterHSCT: PioneerSuperpowers: tenacity, resilience, curiosity, compassion, holistic approachWith gratitude for time to connect with Dr. Richard K. Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we’re sharing the following verbatim transcript of this conversation, the first of two featuring Dr. Burt. Tune in next Wednesday to hear more in a second conversation with Dr. Burt.Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Ali StrongAI: Multiple SclerosisHSCT: November, 2017Superpower: AcceptanceWhat do you do for yourself that brings you joy? Are you someone who accepts moderation? To what extent do you find balance in life?Check in with Ali Strong to recount her experience finding her way to and through HSCT and learn how she is feeling now at more than five years post-transplant, including her struggles with menopause, disordered eating, and mental health. Join Ali and Zen Jen in discussion about Dr. Burt’s latest book and what’s to come with the podcast.Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: GracielaAI: Multiple SclerosisHSCT: January 2021Superpower: value for lifeAfter initially being told her symptoms were all in her head, Graciela received an apology from her neurologist along with her diagnosis. She was presented with options for treatment including disease modifying therapies and the extreme option of HSCT. When she further explored HSCT as an option, she learned that Clinica Ruiz offered the treatment in her hometown of Monterrey and she immediately connected with family to learn more.Tune in to learn how Graciela kept a positive attitude and mindset to help her take on anger, fear of the unknown, thyroid issues, and covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Heidi PetersonAI: Relapsing Remitting MSHSCT: July, 2019Superpower: strengthDo you take the time to celebrate in life? How often do you recognize the little victories?Although Heidi was diagnosed relatively soon after her first experiences with early symptoms of multiple sclerosis, the doctor she saw focused more on prescribing medications to treat symptoms she was experiencing and it seemed her MS diagnosis was set aside. After seeking other care that led to identifying additional health issues, she soon realized the tally of prescriptions totaled thirty different medications, including some that should not be taken together.Tune in to learn more about how Heidi regained control of her health care and pursued HSCT in Monterrey, spent six months taking cautions to work through neutropenia, only to return to quarantine due to covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Zarko BilalAI: Relapsing Remitting MSHSCT: April, 2021Superpower: positive thinkingWhen did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?The continuation of this two-part episode reveals even more detail about Zarko’s experience with HSCT at the AA Maximov Hospital in Moscow, including how he managed the stress of delays due to covid, how he kept himself busy during isolation, the mindset he embraced, and insights gained during his journey. We are grateful to spend two episodes with Zarko learning about how he trained his mindset in preparation for HSCT and gained new perspectives to carry forward in life post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Zarko BilalAI: Relapsing Remitting MSHSCT: April, 2021Superpower: positive thinkingWhen did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?After a happenstance diagnosis of MS, Zarko initially held on to the hope that his symptoms would be a one-time hit of CIS. Easy to rationalize because of all the stress he experienced, he recovered fairly quickly and set out on his career path as a new attorney. After a year, the disease caught up with him, and unfortunately he noticed new symptoms that helped confirm his diagnosis. As he consulted with research about the disease and various treatment options, he found HSCT and asked two different neurologists for their opinions.Tune in to the first of this two-part episode to learn more about Zarko’s plans to pursue HSCT and how they were delayed by covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Yavor MilanovAI: Relapsing Remitting MSHSCT: Scheduled in March 2022Superpowers: ConsistencyHow well do you attune with culture? Is your mindset one of growth, or is it fixed? How do you navigate your internal compass?After his diagnosis, Yavor felt tired and run-down facing his experience as a new immigrant working three or four jobs at a time. He experienced terrible side effects after steroids and trying an initial disease modifying therapy, so returned home to Bulgaria for a long respite. Rest, reduced stress, and time with family and friends helped reduce his symptoms and after six months, he returned to Canada and began noticing his disease becoming more active. Refusing to accept an incurable disease as his destiny, Yavor made radical changes to his diet and lifestyle to become as healthy as possible. Tune in to learn more about Yavor’s experience with the Wahl diet, mesenchymal stem cells in Panama, how he leaned on the discipline of swimming to keep his motivation and disposition positive, and his ability to anticipate (rather than react) to what is on the horizon, including his plans to pursue HSCT in Russia. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Samantha LakeyAI: Primary Progressive Multiple SclerosisHSCT: July 5, 2021Superpower: eatingAre you someone who believes in fate? How do you recognize joy in yourself?Only after Samantha endured a full-body seizure and spent weeks in the hospital did she finally receive a diagnosis for symptoms that doctors continued to brush aside, even though she had been struggling with fatigue, insomnia, numbness, nerve pain, and loss of balance, loss of vision and taste, tremors, and more for nearly two years. With the proper diagnosis, Samantha and her family were soon connected with individuals and resources that pointed her in the direction of HSCT, including a personal connection with someone who had been through HSCT seven years prior. Tune in to learn more about navigating the possibilities of HSCT from Australia, Samantha’s experience with traveling to Russia for HSCT, and how she is faring just three months post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Mike AI: Multiple SclerosisHSCT scheduled for January 2022Superpower: fortitudeHow do you share your diagnosis with others? How familiar are your loved ones with the demons you battle? How do you reconcile your experience with disease?Having received a diagnosis at the young age of 22 after a bout of optic neuritis, Mike experienced reversal of his symptoms after a round of steroids and figured the disease would be manageable. Fast forward ten years and suddenly Mike realized the disease had actually been simmering just beneath the surface and after a severe hurricane, began more noticeably interrupting his daily functioning. After trying a couple of different disease modifying therapies, Mike was introduced to the idea of HSCT in social media advertisements for the Selma Blair documentary, and began exploring it as an option just two months ago. Tune in to learn more about the various ways that Mike has felt supported along his journey despite the questions and concerns that any HSCT Hopeful has also considered. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician
Revisit Amy's preparation for HSCT and be inspired to move beyond judgment (S7 replay) by Zen Jen Stansbury Koenig
Warrior: Jacob KinchAI Multiple SclerosisHSCT: October, 2020Superpower: new perspectiveWhere do you find glimmers of hope? Do you recognize the double-edged sword of multiple sclerosis? Jacob shares so many relatable aspects of his experience with multiple sclerosis, including frustration with doctors, questionable approaches and decisions around treatment, and challenges with paying for expensive medications. Despite his best efforts with disease modifying therapies, the side effects that Jacob experienced made it dark and difficult to live with MS. Once he found HSCT and began researching, he found a glimmer of hope that was strengthened after he connected with someone at Clinica Ruiz to address his pages of questions. Tune in and learn more about Jacob’s experience at Clinica Ruiz, navigating travel and processing other peoples’ judgments and skepticism, including doctors’ and neurologists’ opinions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourselfWarrior: Cassidy V. ChapmanAI: Multiple SclerosisHSCT: July15, 2019Superpower: Passion for bringing awareness to HSCTTo what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family?After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers.With frank conversation about Cassidy's experience seeking disability about the side effects of multiple sclerosis and its' medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy’s scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities.Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Rachel GalleryAI: Chronic Demyelinating Polyneuropathy DiseaseHSCT: Oct 19, 2020Superpower: EmpathyDo you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support?After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnose Rachel when IVIG helped to offset some of her most problematic symptoms. After five years of managing her disease with IVIG infusions every two weeks, she found herself facing rapid decline, trying a variety of aggressive treatments including cytoxan and rituxan that failed to help. Tune in to learn more about the clinical trial at the Colorado Blood Cancer Institute (CBCI) in Denver, and the confidence to get through the myeloablative protocol and significant complications (namely graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support, illuminate invisibilities, and adjust to life with chronic illness, this conversation with Rachel offers practical strategies to make it through some really tough moments along the HSCT path. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Colorado Blood Cancer Institute HSCT Warrior Podcast
Warrior: Erin SchoenleinAI: Multiple SclerosisHSCT: March 15, 2020Superpower: energy to help other peopleHow wide is your view? Do you know what it feels like to be well? For how long have you been distanced? Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinning challenges into positive opportunities. Although she did not qualify for the clinical trials in the United States, Erin researched her options and found herself at Clinica Ruiz just prior to the start of the global pandemic. Erin distracted herself from the chaotic stress of COVID by surrounding herself in a bubble of staying focused on positivity and gratitude expressed by others around her. During this conversation with Erin, hear more about how her experiences in Mexico and her quarantine upon returning home helped motivate her to find inclusive ways to empower others.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Sail MSPaavitforward.orgHSCTWarriors.org
Warrior: DeWayne DurrAI: Multiple SclerosisHSCT: Oct 29, 2020Superpower: ConfidenceHow supported do you feel? To what extent do you think about each step that lies ahead? Continuing from where we left off in this two part episode, tune in to learn from DeWayne as he shares more about his experience navigating his return to work, changes with his diet, and considerations for health and wellness while in the early stages of recovery from the myeloablative protocol at Cleveland Clinic. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:www.rooftopprayerwarrior.comwww.hsctwarriors.org
Warrior: DeWayne DurrAI: Multiple SclerosisHSCT: Oct 29, 2020Superpower: ConfidenceAre you one to Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS study, including securing insurance coverage, the staff and his in-patient experiences, as well as logistics and details about the time spent after discharge in a nearby hotel, DeWayne shares so many valuable insights, this interview airs as a two-part episode.Tune in this week to hear the details about being in-patient at Cleveland Clinic and logistics for after-care in Cleveland, and next week, join us to hear more about DeWayne’s experience with recovery so far.Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:www.rooftopprayerwarrior.comwww.beat-ms.org
Warrior: JocelineAI: Multiple SclerosisHSCT: soon in 2021?Superpowers: doing nothingHow comfortable are you with uncertainty? Are you able to leave the unknown alone? How do you find patience when you find yourself on the brink?Picking up where we left off in this two part episode, tune in to learn more about how Joceline reacted to the idea of incorporating a wheelchair as an assistive device, how she continues to manage her multiple sclerosis as she awaits HSCT, and the practices she has learned through various resources and connections. As a nurse’s assistant by training, Joceline continues detailing her journey beyond diagnosis, attempts at treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience with lockdown in the UK while awaiting the Russian border to open.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:HSCT MoscowMS Tripping on Air InstagramHSCT Warriors PodcastHSCT Warriors, Inc.
Warrior: JocelineAI: Multiple SclerosisHSCT: sometime in 2021?Superpowers: doing nothingHow do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Chi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal’ despite her diagnosis. Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse’s assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Bates Natural Vision Improvement ExercisesRadical Acceptance by Tara BrachAhna Crum
Warrior: Amy CapelAI: Multiple SclerosisHSCT: October 2021Superpower: mentalityTo what extent are you distracted? Have you ever been on the outside looking in?We first met Amy in Season 7 when she described her struggle to understand the disease and the storm of negative side effects from the first medication she tried. Thanks to a friend who had success with HSCT, Amy was convinced and committed to making the best decisions for herself and her family which meant advocating for herself to pursue HSCT. We last spoke with Amy the day before she met with a new neurologist at Duke University, just days before she was scheduled to travel to Clinica Ruiz in Puebla.Tune in to hear more details about Amy’s experience with the clinic, the culture, the physical and the mental components of her journey to HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: DeWayne DurrAI: Multiple SclerosisHSCT: October 20, 2020Superpowers: gratitudeDo you enjoy finding the why? How often do you extend gratitude?As the first person to receive HSCT as a part of the BEAT-MS trial at the Cleveland Clinic, DeWayne has graciously offered great insights throughout his journey, including this update at nearly two-years post-transplant. From the strategies he has pursued to promote healing, to observations about interactions with others, this episode offers an abundance of resources that have helped along DeWayne’s journey.Tune in and be inspired by DeWayne’s superpower of gratitude and his openness in sharing his story as the first person treated at the Cleveland Clinic on the BEAT-MS trial at the Cleveland Clinic. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:LED light therapy and Cryotherapy at the Chill Zonewww.rooftopprayerwarrior.comwww.hsctwarriors.org
Warrior: Allison CarrAI: Multiple SclerosisHSCT: December, 2014Superpowers: hope and grit Are you motivated to give back to others? To what extent do you recognize superpowers in others? How challenging is it for you to be optimistic?As someone who spent nearly twenty years battling the unknown, Allison was surprised to be approached by a stranger curious about her drop foot, and even more surprised when she was finally diagnosed with multiple sclerosis. After battling with insurance to pursue HSCT outside a clinical trial in hopes to avoid the transition to secondary-progressive, and dedicating time to healing her physical body post-transplant, Allison continues to find gratitude and spread hope to others along her journey. Reconnect with Allison (who we first met in Season 3) to learn from her personal, physical and spiritual reflections, and how she is faring at nearly eight-years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Medical Medium: Cleanse to Heal by Anthony William
Warrior: Alisha DalyAI: Multiple SclerosisHSCT: hopefulSuperpower: Resilience and compassionHow fair is the playing field in your experience with autoimmune disease? How far have you been strung along before receiving a diagnosis? Despite a severe bout of optic neuritis, it took more than four visits to the emergency room and multiple specialists weighing in before an MRI was ordered to help assess why Alisha was experiencing severe headaches and loss of vision. Although the first interpretation of the MRI was deemed to be a clinically isolated incident and she received steroids which helped alleviate the optic neuritis, within just a few days, Alisha was hit with another attack of pain, floating spots and loss of vision. Tune in and be inspired by Alisha's story of tenacity as she navigates her diagnosis and finding her way to HSCT... someday. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.Resources:Fundraiser: https://gofund.me/2f1385d6Instagram: Dirtygyul_
Warrior: Rebecca KatonicaAI: Multiple SclerosisHSCT: November 2018Superpower: GraceDo you try to explain away that which might be serious? When was the last time you took a leap of faith?After an explosive headache behind her eyes, Rebecca found herself at the eye doctor who ordered an MRI that evidenced lesions and diagnosed her with multiple sclerosis. Insistent that she could still participate in a social event while wearing an eye patch, she began steroids that helped reset her double vision and vertigo. At this time, there was only one disease-modifying therapy to try, which gave her flu-like symptoms. Over her twenty-year experience with MS before HSCT, Rebecca tried all but one medication and ended up losing countless bodily functions until the point she was basically bedridden. Tune in to learn more about how Rebecca, despite having trouble sitting up in the car, successfully navigated the journey to Clinica Ruiz to undergo HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well._________________________________Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Cecilia Reyes AI: Multiple Sclerosis HSCT: July, 2018 Superpower: Resilience
To what extent has your view softened? To what extent are you learning as you move through life? Do you find blessings and opportunities in the challenges you face?
Check-in with Cecilia at four years post-transplant and learn from the many insights shared and be inspired to find a compassionate journey with yourself. From mindset and positive self-talk to diet and exercise, this conversation shines a light on the importance of patience, trusting the process, finding connection with yourself and community, and practicing resilience.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Steve Apperson AI: Multiple Sclerosis HSCT: April 9, 2015 Superpower: compassion
Is there anything you can’t do? How often do you find time for reflection? How often do you have space to go within?
After initial symptoms that occurred years apart, when Steve found himself unable to run without foot drop after the same three miles, he consulted with his doctor and after a week, received the diagnosis of multiple sclerosis over the phone. He moved to action raising money and became a top fundraiser for the National MS Society as he found himself researching the possibility of HSCT because he felt worse taking the disease modifying therapies. Eventually deciding to pursue transplant in Moscow, Steve found a majority of his symptoms resolved post-transplant and shifted his focus of advocacy to supporting others and helping more people understand the possibility of HSCT.
Tune in to hear how Steve is doing now, seven years-post transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Steve Apperson on youtube
Warrior: Elyse Meyer AI: Lupus and Sjogren’s HSCT: July 2020 Superpower: not afraid to try new things
Are you aware of being comfortable? How do you define success? How do you define quality of life?
Despite maxing out every possible treatment option, including biologics and steroids, Elyse’s immune system was attacked by two different autoimmune conditions. Diagnosed when bloodwork before a medical procedure indicated that her white blood cell count was low, Elyse was stressed throughout testing to rule out other conditions including cancer and HIV. Once the doctors diagnosed both Lupus and Sjogren’s, she began a rigorous regimen of medications in an attempt to interrupt the sometimes two-year long flares of rashes, eye and mouth dryness, salivary gland pain, and more.
Tune in to hear how HSCT has helped the multiple symptoms that Elyse experienced while battling two autoimmune diseases, whether she faces any side effects from HSCT, and how she is faring now at two years-post transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Kristen Kroen AI: Multiple Sclerosis HSCT: January 2015 Superpower: confidence
To what extent does stress impact you? How full do you feel life is? How well are you able to put fear aside?
As an avid runner, Kristen managed several years of mystery symptoms before receiving the diagnosis of multiple sclerosis in 2009. Despite her aggressive approach with attempting to slow the progression, including solumedrol, rituximab, copaxone, and several other disease modifying therapies, it seemed the drugs had no effect. Kristen found herself slowing each year from running marathons to speed-walking to limping with a cane to a scooter and eventually a wheelchair, unable to hold a fork by 2013. Once she was connected with someone who had received HSCT in Germany, she was convinced. She applied in Italy and Russia and was accepted while she pursued the clinical trial at Northwestern, yet was rejected.
Tune in to hear more about how a gracious pilot on a canceled flight helped her arrive at a second appointment with Dr. Burt to be treated on a compassionate care basis, her experience with divine interventions, trust in Dr. Burt through transplant, and how she is faring seven-and-a-half years later with her new lease on life.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Glen Howard meditation and prayer books
Warrior: Ali Roberts AI: Multiple Sclerosis HSCT: November 6, 2017 Superpower: Motivation
Are you someone who feels your emotions? Do you focus on what can (v. can’t) be done? Can you find the present in each moment?
The beginning of a new season offers the opportunity to check in with Ali and how she is faring, nearly five post-HSCT. Tune in to learn how Ali is managing menopause, strategies for wellness, navigating shifts in diet, exercise, hormones, emotions, and anxiety.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Dr. Burt's non-myeloablative HSCT protocol (not yet recruiting) will be posted at clinicaltrials.gov - contact him in the meantime by emailing burtrrmstrial@scrippshealth.org
Embodiment, fascial awakening, and emotional regulation support offered by Jess Rachel - contact her to learn more by emailing jess4embodiment@gmail.com
Warrior: Vic Bonilla AI: Multiple Sclerosis HSCT: Oct 2020 Superpower: unbreakable resolve
Have you ever felt like an observer of your life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself?
Within a few months of being diagnosed with multiple sclerosis, Vic was connected with someone who was transplanted in Russia ten years ago and immediately began researching HSCT. Once he made his way to Clinica Ruiz for his treatment, he and his brother tested positive for COVID and opted to quarantine in Mexico before returning to Clinica Ruiz for HSCT. By this time, Vic’s brother needed to return to the US, and thankfully Vic was able to hire a caregiver.
Tune in to learn more about Vic’s experience with his caregiver in Puebla, his journey with the MS symptoms that caught him by surprise, his extensive research into HSCT, how things are faring nearly six-months post-HSCT, and the unexpected outcomes he continues to enjoy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Chloe Zallen AI: Relapsing remitting multiple sclerosis HSCT: Oct/Nov 2020 Superpowers: self-love
Are you able to recognize your limitations? Are you aware of your stressors?
As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncertainties of her MS. When she suddenly had numbness along the entire right side of her body, she began googling her symptoms and weighing the possibilities while awaiting the results of an MRI. Though she received a diagnosis soon thereafter, nearly every neurologist she consulted encouraged the same disease-modifying therapy and after researching the side effects, Chloe opted instead to adopt special diets and a natural path to managing her symptoms.
Tune in and learn more about how Chloe found complete relief from her symptoms while away in New Zealand, find motivation to be your own advocate, and how she found her way to HSCT despite doctors’ and friends’ concerns that she would die. Hear more about her experience in Monterrey and how she was able to stay active and sane despite the global pandemic.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Christy Miller Kuziensky AI: MS HSCT: February 2021 in Monterrey Superpowers: patience and trust in Clinica Ruiz
Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?
With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body’s capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Chi Gong, tapeworms, and bee sting therapy.
Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy’s journey helps to reinforce the power of networking and sharing connection with others.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org
Warrior: Ovi James AI: MS HSCT: February 2021 Superpower: mindset
How well do you navigate self-advocacy?
After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi’s goal was to focus on the positive and help her son “see the light at the end of the tunnel” even though she struggled to understand everything that was going on as her family chose not to support her. With the support of various shelters and physical, occupational, and mental health therapies, Ovi was able to focus on healing and learning how to better advocate for herself. She eventually found a rheumatologist who was able to see she was struggling with more than fibromyalgia and scheduled the MRI that led to her multiple sclerosis diagnosis.
Although this interview occurred the weekend that Ovi was preparing to head to Clinica Ruiz in Mexico, it is airing while she is currently undergoing treatment and could use continued support from our HSCT community. Tune in and learn more about Ovi’s journey and how she found strength in being properly diagnosed, and keep such a positive outlook on life and how she turned inward to focus on her gifts in order to actualize the possibilities of pursuing HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Social media YouTube: @ovijames and Instagram: @itsovijames Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org
Warrior: Lynn Rogers AI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) HSCT Hopeful: Superpower: widened lens
Have you ever worried about asking people for help when their investment isn't a sure thing? How do you define barriers to treatment for your autoimmune disease?
As a triathlete, crossfit-er, and marathoner preparing for an Ironman race, imagine the frustration when Lynn found herself paralyzed after two weeks of testing that led to no answers. Having a career in biomedical engineering with a focus on helping individuals with motor-recovery, Lynn was very surprised to find herself struggling with the same acute neurological issues as her patients.
Tune in to learn more about her journey with symptoms that were not “textbook” and how the diagnostic testing not designed to pick up subtleties rendered her borderline, ultimately prolonging a diagnosis. Learn more about Lynn's efforts to find answers and collaborate with her doctors over the course of three years to develop a plan of action that is leading her to pursue HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Clinica Ruiz https://hsctmexico.com
Warrior: Sagira Ahmed Norris AI: Multiple Sclerosis HSCT: January 2020 Superpower: flexibility
Are you someone who prefers to schedule a plan for every detail in life? Do you
After first being diagnosed, Sagira found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run marathons. Once her symptoms began matching what her doctor projected for her years down the road, she happened upon HSCT by chance while in Europe. After returning home, Sagira did more research and then talked with her doctor, only to be told that HSCT wasn’t an option for her, particularly the kind of HSCT that involved leaving the country.
Tune in to learn more about how Sagira defined her path to HSCT, the flexibility she gained throughout her experience, and whether she qualified for the Boston Marathon even before her one-year HSCT birthday.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: HSCT Warriors, Inc.
Warrior: Brooke Slick AI: Multiple Sclerosis HSCT: 2013 Superpower: surrender
Are you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen?
Revisit Brooke’s journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influence of mindset, and the inspirations she has found with persevering in her battle with MS beyond HSCT.
Tune in to check-in with our dear friend, Brooke and hear more about how she continues to support others along their journey to HSCT and celebrate the gifts of community and service to others.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: The MS Gym Podcast The MS Gym HSCT Moscow HSCT Warriors, Inc.
Warrior: Felicia Merritt AI: Progressive Multiple Sclerosis HSCT: August 2020 Superpower: Feeling invincible
Have you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace?
Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an intense crossfit workout, Felicia hoped she could laugh things off until she checked herself into the hospital. Her doctors referred her to Ohio State University and once surrounded by a medical team for a few days, Felicia was diagnosed with multiple sclerosis in 2018.
Tune in to learn more about HSCT despite COVID and details about the level of detail, treatment and care Felicia received at Clinica Ruiz, and all that she has gained in just the first couple of weeks post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Marlo Kalb AI: Relapsing Remitting Multiple Sclerosis HSCT: confidence to fight back Superpower: 9.30.19
How will you face the many curves that lie ahead?
Diagnosed at just 13 years old, Marlo found herself eager for HSCT after doing research and listening to this podcast. First interviewed as a HSCT Hopeful during Season 2, Marlo shared her journey to become the first person transplanted in Boston. After facing administrative issues, delays, and opinions not favorable to her candidacy, tune in to learn more about how Marlo faced the multiple twists and turns that eventually led her to Clinica Ruiz. Join us in celebrating Marlo’s one-year stem-cell birthday and how HSCT has impacted her after spending 13 years living with MS.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Mendo Micevski AI: Primary Progressive Multiple Sclerosis HSCT: June 2021 Superpower: Mindset
Are you someone who prefers to live in the shadows? How well do you notice the ‘chalk and cheese’?
After years of noticing odd symptoms that doctors could not figure out, Mendo was walking to dinner one Saturday evening when his vision became blurry and doubled in his left eye. The following day he visited a specialist’s hospital in Melbourne where the doctor noticed inflammation of his optic nerve, suggested it could be multiple sclerosis, and encouraged him to get an MRI. After receiving the diagnosis in 2005, Mendo was in a bit of shock as he was unfamiliar with the disease, aside from commercials about the medications that depicted people in a wheelchair.
Tune in to learn more about the slow decline that Mendo experienced, how he learned that HSCT might be an option for him (though not in Australia), his journey to Russia, his experience during HSCT and returning to quarantine in Australia, and how he is faring and all the differences he is noticing at 10 months post-transplant.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Stacy McNall AI: Primary Progressive Multiple Sclerosis HSCT: May 14, 2019 Superpower: being still
Are you someone that trusts the process? How do you handle the need to slow down? Are you able to find calm in the storm?
As a very active person who “lived in overdrive” as a nurse practitioner and marathoner, Stacy tended to set aside the symptoms she experienced for nearly 18 years before she was diagnosed. During her 14th marathon, Stacy tried her best to get moving but her legs would not cooperate and she finally went to see a doctor. After trying several disease modifying therapies that did not seem to help, Stacy looked further into HSCT while she was hospitalized with a relapse and was successful enrolling in the clinical trial at Northwestern just before it ended.
From relapses, to support from reiki masters, to issues with insurance, to reactions during the stem cell transplant including a blood clot, psychosis, and extreme nausea, Stacy seems to have experienced everything along the HSCT rollercoaster. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Reiki Myofascial release Vibration plate
Continue learning Carolyn’s insider perspective with HSCT at the Cleveland Clinic (Ep. 82 part 2) by Zen Jen Stansbury Koenig
Warrior: Carolyn Deming AI: Multiple Sclerosis HSCT: scheduled May 4 Superpower: blatant honesty
Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?
After experiencing significant eye pain but no other symptoms, Carolyn was “utterly stunned” to be diagnosed with multiple sclerosis on her 32nd birthday. Her first significant relapse occurred just five months after. Having started a disease-modifying therapy that gave her flu-like symptoms, it wasn’t long before she carved her own path forward through several DMTs and emotions tied to the entire experience of chronic illness that led her to pursue HSCT.
Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Carolyn’s blog: Mychroniclibrary.com Cuddle clone Matt Haig books
Warrior: Charissa Rigano AI: Multiple Sclerosis HSCT: December, 2020 Superpower: self-confidence
In our first tandem interview, meet HSCT Warrior Charissa and physical therapist, Dr. Gretchen Hawley, who have been collaborating throughout Charissa’s experience with multiple sclerosis. Dr. Hawley committed to specializing in multiple sclerosis and, in consideration for the challenges that any particular day might introduce to someone battling autoimmune disease, to making her services and support more accessible and available to her clients. Charissa met Dr. Hawley years prior and reconnected with her upon returning home from Clinica Ruiz for HSCT.
Join us to learn more from the professional perspective about the nuances of neuroplasticity, and specialization of physical therapy for autoimmune disease, as well as to hear comparisons from the patient perspective on the experiences with dedication to “move it or lose it” in order to support wellness for the next decades.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: www.msinglink.com Instagram: Dr.Gretchen Facebook: MS Wellness and Support with Dr. Gretchen PT Youtube: DrGretchenHawley
Warrior: Joceline AI: Multiple Sclerosis HSCT: March 29, 2021 Superpower: tenacity
How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience?
Last week we reconnected with Joceline, who we first met in Season 6 while she anxiously awaited hearing about when she might be able to schedule HSCT in Moscow, as she was not eligible in her home in the UK. A bit over one year ago, she was finally able to secure a visa and travel through Turkey before arriving at the AA Maximov hospital in Moscow. Last week’s episode we learned about her experiences getting to, and during her stay in the hospital. Tune in this week to pick up where we left off last week and learn how Joceline fared during her return home, including how “out of this world difficult” the first three months home were, and how recovery has been going since she got home.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Joceline AI: Multiple Sclerosis HSCT: March 29, 2021 Superpower: tenacity
How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience?
When we first met Joceline in Season 6, she shared concerns over the COVID variant in the UK that had delayed her acquiring a schedule to begin HSCT at the AA Maximov hospital in Moscow. Nearly one year since we last spoke, Joceline celebrated her one-year stem cell birthday and joined us to share details about how she finally made it to Moscow, through pre-testing, and underwent the transplant while connecting with other patients to pass the time before isolation. Tune in to hear how she embraced the chemo, despite unexpected side effects from the chemo, including dizziness and immediate onset of menopause. Learn more about how isolation did not go as planned for Joceline, and how she established gentle boundaries to support herself through the unexpected depression that ensued during isolation. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Eric Saperstein AI: Multiple Sclerosis HSCT: July 5, 2020 Superpower: Speed (to HSCT)
Are you someone to live in the present, or anticipate the future? How do you know what’s going to help you? Where do you find hope?
After experiencing trigeminal neuralgia and receiving an MRI that diagnosed him with MS, Eric consulted with two different neurologists. Rather than discussing the efficacy of his options, one doctor encouraged him to decide which medicine to try based on a bag of marketing materials, and another doctor suggested he choose based on whether he wanted to take a pill or give himself injections. Despite knowing several people diagnosed with multiple sclerosis and consulting with a family friend who is a neurologist, Eric only learned about HSCT by conducting his own research.
Tune in to learn more about when and where Eric chose to pursue HSCT, the resources available to him during treatment, including a cure for the 9 hour bout of hiccups that he experienced as a side-effect of the chemo, and how he’s faring post-HSCT as he commits to supporting his gut health by eliminating mycotoxins. And, please forgive the ‘ghost in the machine’ interference throughout this episode…
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: HSCT and Cellular Therapies for Autoimmune Diseases (Burt, Farge, Ruiz, Saccardi & Snowden, 2022).
Warrior: Jan-Marie AI: Multiple Sclerosis HSCT: June 16, 2020 Superpower: Hope
What do you think is happening? How do you advocate for yourself when seeking answers?
Nearly immediately after HSCT, Jan-Marie experienced significant improvements with her balance and walking and knew in her heart that HSCT worked to halt progression. So, when Jan-Marie began experiencing new challenges, pain, and neurological issues at just 5 months post-HSCT, she became very determined to find answers. Although her doctors insisted that the multiple sclerosis had returned, Jan-Marie had a feeling that what she was experiencing was in fact very different from multiple sclerosis. Tune in to learn more about the variety of options that Jan-Marie pursued, from a top-off of chemo to spending a month in the hospital for nearly every test imaginable, including two MRIs that showed no MS-related activity.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Hydrafil Feasibility Study by RegelTec Talk to a Warrior at HSCTWarriors.org
Warrior: Ali Roberts AI: Multiple Sclerosis HSCT: November 2017 Superpower: Gratitude
How happy are you with what is happening today? Where are you along the journey with acceptance? How do you live your best life?
The beginning of a new season offers the opportunity to check in with Ali the four-year mark of HSCT recovery. Tune in to learn more about how Ali has navigated psychological and emotional wellbeing and learn how she found a way to accept all the changes that come along with the long process of healing damages incurred by multiple sclerosis including the invisible aspects of orthorexia, finding alternative exercises to promote bone and muscle strength, and exploring supplements that can support our well-being.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: MS Gym
Warrior: Michelle Webb AI: Relapsing Remitting Multiple Sclerosis HSCT: 5/19 Superpower: Compassion and understanding
Are you someone to believe that everything happens for a reason? How often does your experience with disease cancel plans with friends and family? How often are you kind to your body and mind?
After realizing the eighth disease modifying therapy she tried (since 2011) wasn’t helping her feel any better, Michelle began looking into options. As a person who doesn’t trust blindly, hear more about how Michelle - also, a high school friend of Jen’s - gained information when she found herself seeking guidance about next steps, and found the courage to move forward despite her doctor’s opinion.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: HSCT Warriors, Inc. Northwestern Memorial Hospital
Warrior: DeWayne Durr AI: Relapsing Remitting Multiple Sclerosis HSCT: scheduled for September, 2020 Superpower: prayer and understanding
How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?
After DeWayne researched the disease-modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration to be considered for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, the details of participating in the clinical trial, and COVID. Learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Ron Gabrielli AI: Multiple Sclerosis HSCT: 5/6/17 Superpower: Hope
How inspired are you to help others? How important are caregivers in your journey with disease?
After enjoying such an incredible experience at Clinica Ruiz, Ron and his wife have spent countless hours connecting with individuals to answer questions and share support to help people make informed decisions about HSCT. While all Ron cares about is paying forward the support he received in his experience, he joins so many others post-HSCT who question the systems that keep HSCT out of reach for so many.
Tune in and learn more about the various strategies that Ron has tried out during his three plus years of recovery, how he managed to check his pride, and all the hope he holds on to as he continues reconciling with the realities of recovery. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Tao Patch Ex N Flex
Warrior: Chelsey Bell AI: RRMS HSCT: 7/11/18 Superpower: Self awareness
How often do you find time to reflect on what works for your body? Have you been able to truly appreciate time with yourself? How does it feel to connect with someone else over commonalities?
Sharing insights to her solo experience getting to Moscow, Chelsey offers so much inspiration for the importance of mindset, taking time to figure out what works, and finding lessons from her younger self, and accepting challenges without holding on to frustration. With updates on her fundraising experience and securing an Alinker to promote her recovery, Chelsey shares an abundance of wisdom and resources.
Tune in to hear more about Chelsey’s journey to Moscow for HSCT and how she is faring after two years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Eye mask Alinker Nonprofit: Move, Live, Prosper
Warrior: Jan-Marie Morgan AI: Multiple Sclerosis HSCT: June, 2020 Superpower: Patience
How often do you take doctors’ first opinions without questioning? How often do you take time for self-care?
Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse practitioner by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.
Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks post-transplant.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Calm app
Warrior: John Taylor AI: Multiple Sclerosis HSCT: September 2019 at Northwestern Superpower: Appreciation
Have you ever tried to describe the sensation of severe pain, despite knowing that you’re also physically numb? When side effects and risk outweigh the good, how do you make a choice? How do you feel when selected for the chance of a lifetime, knowing others have to miss that chance?
After years of living with symptoms considered insignificant, John finally received a diagnosis of multiple sclerosis in 2010 from his third opinion doctor. While the first disease modifying therapy seemed to work for nearly a decade, just as John began to fear a future with little hope about his new normal, his wife stumbled upon HSCT in time for him to be treated in Dr. Burt’s last cohort before sabbatical.
Tune in and learn more about John’s experience with loss of balance, shooting pains, burning sensations, optic neuritis, and other symptoms that he experienced with multiple sclerosis.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Patient care manuals for post-HSCT Research articles
Warrior: Kim Rodning AI: Scleroderma HSCT: September 4, 2018 at Duke University Medical Center Superpower: perseverance, patience, and perspective
Do you practice daily affirmations of positivity? Does your self talk promote healing or judgment? How does hearing the stories of other Warriors help you?
Having encountered the possibility of HSCT by chance, Kim explored more about the research and program for Scleroderma patients at Duke University. Thankfully, she found HSCT just before her lungs hardened to the point where she wouldn’t have qualified.
Tune in and learn more about her experience and symptoms of scleroderma, the aid she received to fight for insurance coverage, and the team of caring angels at Duke that helped motivate Kim to fight back.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Facebook @KimberlyRodning
Warrior: Jess Green AI: MS HSCT: February 2019 at St Vincent's Hospital, Sydney - trial by the Kinghorn Cancer Centre Superpower: Love and compassion from others
When your doctors run out of options, are you ready to suggest a course of action? Despite the scary struggle or the bad times, can you find the goodness? How strong is your support system?
With a relatively quick diagnosis of Multiple Sclerosis after her first sign of an issue, Jess researched treatment options and found her doctors at a loss for how to combat her relapses after she failed three different disease modifying drugs in just two years. She encouraged her doctors to send her records to the team running the HSCT Clinical Trial at St. Vincent’s Hospital in Sydney and suddenly found herself accepted to proceed with HSCT.
Tune in and learn more about the importance of connections, compassionate caregivers, and the struggle that Jess experienced when she experienced an allergic reaction during the BEAM protocol with Dr. John Moore and Dr. Barbara Withers at Kinghorn Cancer Centre in Sydney Australia.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Lydia Rosenbaum AI: Crohn’s Disease HSCT: August 2002 at Northwestern Memorial, Chicago Superpower: Empathy and belief in self
After spending time in palliative care planning to die, how do you find the right time to celebrate success with surviving? How do you find compassion for people who have never walked in your shoes? How often do you push your limits?
Despite suffering extreme complications with Crohn’s disease that kept her in and out of the hospital through multiple surgeries and dangerous fevers, Lydia woke up after surgery one day and was suddenly told “you cannot eat”. Before she even turned 30, on medical disability and living in the hospital more than out, Lydia found herself striving to survive, advocating for consistency and questioning the ethics of efforts to keep her alive.
Having prepared to face death from her aggressive form of Crohn’s, Lydia was very surprised to find herself feeling so isolated after HSCT after she realized she instead could prepare to live. Join us and learn more from Lydia about her experience and the path that led her to the Phase II Clinical Trial as one of the very first patients treated for Crohn’s Disease by Dr. Burt at Northwestern.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tamara Netzel AI: Multiple Sclerosis HSCT: Dec. 2019, Monterrey Mexico Superpower: truth
Have you ever been close to a resolution, only for it to slip through the cracks? How long has it taken for you to feel supported by your doctors? What would it look like if you pledged to help just one person get to HSCT?
After a long road to diagnosis, the first disease modifying treatment that Tamara tried sent her liver into failure. The second DMT created side effects within the first two doses including bladder problems and damage to her ninth cranial nerve that caused extreme pain over the course of ten months as she fought for answers until she found cannabis to be her only relief. Finally after a third DMT proved ineffective, Tamara found research on HSCT and by connecting with other HSCT Veterans about their experience with Clinica Ruiz, and was ultimately convinced to travel abroad where she found better care than she had ever before received.
Join us for this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation and taking calculated risks to avoid desperation in order to find quality care or sense of belonging in community.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Craig Witkowski AI: Multiple Sclerosis HSCT: September 2019 in Puebla Superpower: Patience
Do you find it tough to maintain patience with yourself or doctors? How easily do you find a positive mental outlook? How tightly do you hold hope?
After being on a first-line drug to hold off initial onset of his MS symptoms, Craig found benefit for a few years until he stopped the medication due to unwelcome side effects, which then caused issues for a couple of years. After changing careers, he spent time without any sign of the disease and then suddenly Craig was blind-sided by an experience while driving that left him nearly paralyzed. Without much of an explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch his disease progression and caused too many side-effects.
Craig researched more about stem cell treatments because his doctors could only offer vague uncertainties and although he found Dr. Burt’s clinical trial at Northwestern, after spending a year fighting insurance to pursue HSCT, Craig learned his disease had progressed, leaving him ineligible for the study criteria. Not willing to give up hope, Craig traveled to Texas for a presentation about Clinica Ruiz and was sold on the possibility that HSCT offered him.
Tune in and learn more about Craig’s unique challenges, fundraising efforts, power of patience, tremendous support of family and friends, and will to find his way to HSCT at Clinica Ruiz in Puebla, Mexico.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next week for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
arrior: Meghan Newell Davis AI: Scleroderma HSCT: 1/22/19 Duke University Superbower: Unbreakable
Have you ever watched a doctor google your symptoms to find help? How often do you take the little things in life for granted? As you move through life, do you take caution not to 'poke the bear'?
Celebrating a son just one year younger than her new immune system, Meghan offers our listeners a glimpse into life with a very aggressive form of scleroderma and her experience with HSCT at Duke University. The highly competitive-Ironman-Nutritionist suddenly found her body to be suddenly sore, stiffening and stonelike. As she continued struggling to hide invisible symptoms that were physically shutting down her body, she spent weeks visiting doctors, researching her symptoms, and experimenting with various alternative remedies to find some relief.
Tune in and hear more about the freight train that wrecked Meghan’s capacity to function in everyday life despite not looking sick. Once she was connected with a rheumatologist, Meghan finally had diagnoses of multiple autoimmune diseases and was fast-tracked to HSCT at Duke University. Through HSCT Meghan gained lifelong warrior friends and family, including her doctors, nurses and care team.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Dr. Twining, Myrtle Beach Dr. Baker Frost, Medical University of South Carolina
Warrior: Jess Faulds AI: Multiple Sclerosis HSCT: July 2019 in Calgary, CA Superpower: Sensation and mental strength
How do you react when people stare at you? At what age did you feel confident about managing your options with autoimmune disease? Where do you find faith in humanity?
Being diagnosed with MS at 15 years young certainly wasn’t a walk in the park for Jess, but it motivated her to keep active and persistent with staying informed about her options. As someone raised to value movement and nutrition, Jess was sure to incorporate these cornerstones throughout her experience with HSCT.
Tune in and learn more about her routines that promoted a quick rebound from HSCT and the holistic approach to HSCT care and treatment at the clinics in Canada in Calgary and Ottawa.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Wrap Me Cool wraps Jess Faulds on Instagram: allthrightbites MS Society of Canada
Warrior: Ahna Crum AI: Multiple Sclerosis HSCT: April, 2016 in Moscow Russia Superpower: Shapeshifting
What motivates you to find curiosity in life? Have you ever been let down by a one-size-fits-all approach? How equipped are you to adapt?
After suffering significant relapses from an early age, in her late twenties Ahna found HSCT through her research trying to avoid moving into an assisted living facility. With great determination and a positive mindset, Ahna found Moscow to be a welcoming, supportive place.
As someone who leaped into HSCT without any doubts, Ahna found the recovery rollercoaster to be quite the challenge. Tune in to find out more about the post-transplant complications that Ahna faced, how she was able to find her own solutions to heal her body, and how she found her passion to become a partner for HSCT warriors along their journeys.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: What the Heck Should I eat? by Mark Hyman Psychobiotic Revolution: Mood, Food, and the New Science of the Gut-Brain Connection by Scott C. Anderson MS Gym Podcast _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Graciela AI: Multiple Sclerosis HSCT: January 2021 Superpower: value for life
How do you find peace of mind? Do you feel supported by family and doctors? How do you explore purpose in life?
After initially being told her symptoms were all in her head, Graciela received an apology from her neurologist along with her diagnosis. She was presented with options for treatment including disease modifying therapies and the extreme option of HSCT. When she further explored HSCT as an option, she learned that Clinica Ruiz offered the treatment in her hometown of Monterrey and she immediately connected with family to learn more.
Tune in to learn how Graciela kept a positive attitude and mindset to help her take on anger, fear of the unknown, thyroid issues, and covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Heidi Pete AI: Relapsing Remitting MS HSCT: July, 2019 Superpower: strength
Do you take the time to celebrate in life? How often do you recognize the little victories?
Although Heidi was diagnosed relatively soon after her first experiences with early symptoms of multiple sclerosis, the doctor she saw focused more on prescribing medications to treat symptoms she was experiencing and it seemed her MS diagnosis was set aside. After seeking other care that led to identifying additional health issues, she soon realized the tally of prescriptions totaled thirty different medications, including some that should not be taken together.
Tune in to learn more about how Heidi regained control of her health care and pursued HSCT in Monterrey, spent six months taking cautions to work through neutropenia, only to return to quarantine due to covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Zarko Bilal AI: Relapsing Remitting MS HSCT: April, 2021 Superpower: positive thinking
When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?
The continuation of this two-part episode reveals even more detail about Zarko’s experience with HSCT at the AA Maximov Hospital in Moscow, including how he managed the stress of delays due to covid, how he kept himself busy during isolation, the mindset he embraced, and insights gained during his journey. We are grateful to spend two episodes with Zarko learning about how he trained his mindset in preparation for HSCT and gained new perspectives to carry forward in life post-transplant.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Zarko Bilal AI: Relapsing Remitting MS HSCT: April, 2021 Superpower: positive thinking
When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?
After a happenstance diagnosis of MS, Zarko initially held on to the hope that his symptoms would be a one-time hit of CIS. Easy to rationalize because of all the stress he experienced, he recovered fairly quickly and set out on his career path as a new attorney. After a year, the disease caught up with him, and unfortunately he noticed new symptoms that helped confirm his diagnosis. As he consulted with research about the disease and various treatment options, he found HSCT and asked two different neurologists for their opinions.
Tune in to the first of this two-part episode to learn more about Zarko’s plans to pursue HSCT and how they were delayed by covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Javor Milanov AI: Relapsing Remitting MS HSCT: Scheduled in March 2022 Superpowers: Consistency
How well do you attune with culture? Is your mindset one of growth, or is it fixed? How do you navigate your internal compass?
After his diagnosis, Javor felt tired and run-down facing his experience as a new immigrant working three or four jobs at a time. He experienced terrible side effects after steroids and trying an initial disease modifying therapy, so returned home to Bulgaria for a long respite. Rest, reduced stress, and time with family and friends helped reduce his symptoms and after six months, he returned to Canada and began noticing his disease becoming more active.
Refusing to accept an incurable disease as his destiny, Javor made radical changes to his diet and lifestyle to become as healthy as possible. Tune in to learn more about Javor’s experience with the Wahl diet, mesenchymal stem cells in Panama, how he leaned on the discipline of swimming to keep his motivation and disposition positive, and his ability to anticipate (rather than react) to what is on the horizon, including his plans to pursue HSCT in Russia.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Samantha Lakey AI: Primary Progressive Multiple Sclerosis HSCT: July 5, 2021 Superpower: eating
Are you someone who believes in fate? How do you recognize joy in yourself?
Only after Samantha endured a full-body seizure and spent weeks in the hospital did she finally receive a diagnosis for symptoms that doctors continued to brush aside, even though she had been struggling with fatigue, insomnia, numbness, nerve pain, and loss of balance, loss of vision and taste, tremors, and more for nearly two years. With the proper diagnosis, Samantha and her family were soon connected with individuals and resources that pointed her in the direction of HSCT, including a personal connection with someone who had been through HSCT seven years prior.
Tune in to learn more about navigating the possibilities of HSCT from Australia, Samantha’s experience with traveling to Russia for HSCT, and how she is faring just three months post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Mike AI: Multiple Sclerosis HSCT scheduled for January 2022 Superpower: fortitude
How do you share your diagnosis with others? How familiar are your loved ones with the demons you battle? How do you reconcile your experience with disease?
Having received a diagnosis at the young age of 22 after a bout of optic neuritis, Mike experienced reversal of his symptoms after a round of steroids and figured the disease would be manageable. Fast forward ten years and suddenly Mike realized the disease had actually been simmering just beneath the surface and after a severe hurricane, began more noticeably interrupting his daily functioning.
After trying a couple of different disease modifying therapies, Mike was introduced to the idea of HSCT in social media advertisements for the Selma Blair documentary, and began exploring it as an option just two months ago. Tune in to learn more about the various ways that Mike has felt supported along his journey despite the questions and concerns that any HSCT Hopeful has also considered.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Amy Capel AI: Multiple Sclerosis HSCT: scheduled for October 2021 Superpower: Thinking
What is your response to the judgment of others? To what extent do you control your mindset? Are you committed to eliminating negativity?
When Amy was first diagnosed with multiple sclerosis, she not only struggled to understand the disease, she ended up struggling with a storm of negative side effects from the first medication she tried. Having a friend who went through HSCT five years ago, tune in to learn more about why Amy is just now pursuing HSCT, how she is navigating the opinions of her doctors, and how she is committing to making the best decisions for herself and her family.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes, Pandora, Spotify, Stitcher or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Jacob Kinch AI Multiple Sclerosis HSCT: October, 2020 Superpower: new perspective
Where do you find glimmers of hope? Do you recognize the double-edged sword of multiple sclerosis?
Jacob shares so many relatable aspects of his experience with multiple sclerosis, including frustration with doctors, questionable approaches and decisions around treatment, and challenges with paying for expensive medications. Despite his best efforts with disease modifying therapies, the side effects that Jacob experienced made it dark and difficult to live with MS. Once he found HSCT and began researching, he found a glimmer of hope that was strengthened after he connected with someone at Clinica Ruiz to address his pages of questions.
Tune in and learn more about Jacob’s experience at Clinica Ruiz, navigating travel and processing other peoples’ judgments and skepticism, including doctors’ and neurologists’ opinions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Ali Roberts AI: Multiple Sclerosis HSCT: November 2017 Superpower: Gratitude
Are you familiar with your fears? Are you open to freeing your authentic self? Are you living your best life?
We’re so grateful to check in with Ali to begin each new season of the podcast to help portray the continual journey of recovery from HSCT, as it can have several layers and play out in very different ways for different people. As someone who was not too keen on exploring new things prior to transplant, tune in to hear more about the various transformations Ali has experienced and how recovery is going nearly four years post-transplant.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Tamra Minch MS Caregiver HSCT: April 2019 Superpower: Humility
Are you able to make time for yourself when caring for others? When faced with the whirlwind of life, what do you focus on? How does resiliency inform your outlook?
When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT.
Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Barry Goudy AI: MS HSCT: August, 2003 at Northwestern in Chicago Superpower: Belief
When it comes to solutions for your experience with disease, how do you determine whether a treatment is good enough? How far are you willing to go with research? How do you place a value on health?
Despite the devastation after initially failing requirements for the clinical trial protocol, Barry remained persistent to receive HSCT. Once he was accepted for a new study protocol, Barry geared up for halting the progression and enjoyed such a great experience that he has become an ongoing champion for HSCT.
Tune in and hear more about how he tried his best to broadcast the hope and opportunity of HSCT with others, and even testified in front of the United States Congress. This final episode of Season 3 also offers updates about the signature “Talk to a Warrior” program of the HSCT Warriors, Inc. nonprofit.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Denise Bishop AI: Stiff Person Syndrome HSCT: 9/12/17, Chicago Superpower: empathy
How often do you listen to the voice in your head? How much can you afford to endure? What are your strategies to sort through all that needs attention?
Join us to check in with Denise following her two-year check up post-HSCT in Chicago. Learn more about the unexpected twists and turns along her ongoing rollercoaster, and how Denise faced the fluctuations that led to another autoimmune diagnosis, a traumatic fall, and tragic loss of her grandson.
Despite all the setbacks she has faced, Denise holds firm to a positive attitude and resilient mindset that is inspiring for any warrior. Tune in, find connection, and share in the sense of community.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Ahna Crum AI: Multiple Sclerosis HSCT: April, 2016 in Moscow Russia Superpower: Shapeshifting
What motivates you to find curiosity in life? Have you ever been let down by a one-size-fits-all approach? How equipped are you to adapt?
After suffering significant relapses from an early age, in her late twenties Ahna found HSCT through her research trying to avoid moving into an assisted living facility. With great determination and a positive mindset, Ahna found Moscow to be a welcoming, supportive place.
As someone who leaped into HSCT without any doubts, Ahna found the recovery rollercoaster to be quite the challenge. Tune in to find out more about the post-transplant complications that Ahna faced, how she was able to find her own solutions to heal her body, and how she found her passion to become a partner for HSCT warriors along their journeys.
Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: What the Heck Should I eat? by Mark Hyman Psychobiotic Revolution: Mood, Food, and the New Science of the Gut-Brain Connection by Scott C. Anderson MS Gym Podcast _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Katie Hominsky AI: MS HSCT: Chicago Superpower: Confidence
Who has your back when things get tough? When facing struggles in life, where do you seek support? How do you find hope and understanding?
Tune in for this post-HSCT update from Katie, our first Hopeful interviewed about her Hope Journey to HSCT and hear more about her recovery rollercoaster. She offers updates on her fundraising initiatives and support strategies, and shares more about her ongoing Hope Journey.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tracey Rossi AI: MS HSCT: August 2018 Superpower: motivation
Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down?
As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Paul Wheeler AI: Secondary Progressive Multiple Sclerosis HSCT: April 10, 2017 Superpower: Dancing
Have you experienced the compassion of humanity? Is your approach to life with disease more of the “cup half empty” or “half full” mindset? Just how full is your cup?
As someone who prefers “research to the nth degree” about medical decisions, Paul weighed the odds of HSCT and determined them better than the 100% chance his disease would progress. Thanks to HSCT, Paul has not only found clarity of mind without the burden of “cog fog” he recognizes that other unexpected improvements he has been so grateful for are not guaranteed.
Tune in to learn more about how Paul rallied the support of his family and community to help raise money in order to get from the UK to Mexico, including a “really weird” journey made of “a marathon a day” spanning 250 miles in his wheelchair. Enjoy this inspiring story of energetic joy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Jarrod Schlipf AI: Multiple Sclerosis HSCT: November 2014 Superpower: Patience
How much effort/time/money has been spent battling autoimmune disease? What is your contribution to the outcomes that you are seeking? How committed are you to making time to build habits that nourish your mind, body and soul?
Tracing his 17 year experience with MS to an auto accident that injured his neck, Jarrod continues to find improvements post-HSCT through reducing a majority of his stress, finding the importance of sleeping and rest, and committing to movement and exercise.
Jarrod’s message that “You get out of HSCT… what you put into HSCT” inspires shifts in thinking and movement of both the mind and body. Recognizing the challenges that he might still face through ongoing recovery, by embracing a positive mindset and gratitude Jarrod is able to find patience and space to focus on getting better and living his second chance at life.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tammy Kazen-Richert AI: Primary Progressive MS HSCT: 2013, AA Maximov Hospital, Moscow Russia Superpower: Incredible hulk-type shifts between calm intention and strength to power through
How intentional are you about making memories? Which side of the coin are you on? Who are the people in your life that you can count on as running partners?
After she spent years managing another autoimmune issue, Tammy found HSCT in her initial research to learn more when she was initially diagnosed with primary progressive multiple sclerosis. After being denied elsewhere for HSCT due to the PPMS diagnosis, she found that Russia offered a path to HSCT that Tammy chose to run.
Finding a new sense of community among fellow HSCT Warriors has been an uncomparable support for Tammy as she realized that even after a successful transplant, she relapsed after three years post-HSCT and is considered a non-responder. Tune in and be inspired by the brave vulnerability that Tammy shares in her perspective ‘on the flip side of the coin.’
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Allison Carr AI: MS HSCT: 2014/15, Northwestern Memorial, Chicago IL Superpower: Survival
To what extent do your doctors have your best interest in mind? Does the medical community you depend on have accurate information about HSCT?
After suffering symptoms without a diagnosis for twenty years, Allison felt completely ignored by her medical community. As a busy mom in a busy career with a busy life, Allison didn’t find much time for her diagnosis of multiple sclerosis, let alone the frightening side effects of pharmaceuticals. Despite the opinions of multiple doctors, when family friends connected her to the possibility of HSCT in a clinical trial, she did her research and pursued HSCT without hesitation.
Tune in to hear the lessons learned as Allison survived a see-saw insurance battle, challenges to her marriage, and what happened when Allison realized that the little she knew about HSCT was more than what her doctors knew or willing to learn. In listening to Allison’s journey, we hope you’ll be inspired to become your own self-advocate and join her in efforts to spread hope and awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Allison Carr AI: MS HSCT: 2014/15, Northwestern Memorial, Chicago IL Superpower: Survival
To what extent do your doctors have your best interest in mind? Does the medical community you depend on have accurate information about HSCT?
After suffering symptoms without a diagnosis for twenty years, Allison felt completely ignored by her medical community. As a busy mom in a busy career with a busy life, Allison didn’t find much time for her diagnosis of multiple sclerosis, let alone the frightening side effects of pharmaceuticals. Despite the opinions of multiple doctors, when family friends connected her to the possibility of HSCT in a clinical trial, she did her research and pursued HSCT without hesitation.
Tune in to hear the lessons learned as Allison survived a see-saw insurance battle, challenges to her marriage, and what happened when Allison realized that the little she knew about HSCT was more than what her doctors knew or willing to learn. In listening to Allison’s journey, we hope you’ll be inspired to become your own self-advocate and join her in efforts to spread hope and awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Keri Huff AI: Tumefactive multiple sclerosis HSCT: 2010 Superpower: self-advocacy
When you try to advocate for your health and doctors turn you away, how do you persist? Have you ever reflected on how much time you have? Where do you find beauty each day?
At just 28 years old, Keri started experiencing odd symptoms that countless doctors ignored and dismissed. As she persisted through debilitating pain and extreme fevers, an MRI finally evidenced several masses on her brain. After persisting through additional testing and a ten hour brain surgery, she learned she was pregnant but did not walk away with any diagnosis.
As her masses returned, she continued fighting for answers and eventually connected with Dr. Burt at Northwestern. As one of the most tumultuous journeys battling multiple autoimmune diseases, tune in to learn how Keri persisted for ten years struggling to find answers and relief from her pain as a one in 20,000,000 statistic, only to face death with the possibility of HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Bethany Pappalardo Snowflake: Multiple Sclerosis HSCT: 03/08/05 Superpower: heightened awareness
When you need a different course of action, how long will you bide your time? How confident are you among judgement, shock and awe? Will you be ready once you hit rock bottom?
Having so many family members plagued with autoimmune disease, Bethany had just run out of options to treat her MS when her mom happened to watch an interview with Dr. Burt. With a ‘must do’ attitude, Bethany confronted HSCT and the public eye with brave resolve. Proclaiming it to be “literally the best thing that ever happened in my life,” you’ll likely be inspired to shed any fears about HSCT when you hear more of Bethany’s journey.
Tune in to hear more about the reciprocity of community, how Bethany continues to promote HSCT and coach others on their own journeys, as well as insights on why HSCT isn’t an option offered by more doctors.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources noted: Other HSCT veterans Facebook groups
Warrior: Eileen Hushion Snowflake: Multiple Sclerosis HSCT: 01/05/17 Superpower: Knowing you have the rest of your life to look forward to
How much fear do you have when facing uncertainty? How do you adjust when riding a roller coaster? What does normal even feel like?
Despite years of debilitating fatigue and cycling through nine different disease modifying therapies, Eileen had a suspicion that someday, stem cells would help alleviate her pain. After researching the possibility of stem cells on her own, she found immediate support from her neurologist to pursue HSCT at Northwestern in Chicago.
Tune in to hear more about her experience of living with MS for twenty years, changes experienced post-HSCT, and learn more about the recovery roller coaster that has been life changing for Eileen.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Yogaglo Myofascial release
Warrior: Brooke Slick Snowflake: Multiple Sclerosis HSCT: May, 2013 in Moscow, Russia Superpower: Patience
How do you navigate your diagnosis? Would you describe your perspective as positive or negative? How do you normalize your disease?
After years of experiencing symptoms, Brooke was diagnosed with RRMS in 2006 and cycled through various disease modifying therapies, participated in a clinical trial, and sought alternatives to avoid the risk of developing PML. Despite working full time and distracting herself from the avalanche of symptoms, Brooke found herself transitioning into Secondary Progressive Multiple Sclerosis.
Inspired by the first American “ninja warrior” to receive HSCT in Moscow who blogged every detail about her experience, tune in to learn more about how Brooke focused her attention and perspective on the gifts and possibilities of HSCT. Brooke’s realistic perspective helped her embrace a positive approach and tackle the treatment that worked for her.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources:
Warrior: Leta Krieger Snowflake: Secondary Progressive Multiple Sclerosis HSCT: 07-08/18 Superpower: Support from husband and friends
How affiliated are you with your autoimmune disease? How connected are you with your community?
After living with MS for nearly 40 years, when Leta first heard of HSCT while watching the BBC on vacation, she researched it and considered the chance that HSCT could possibly halt her progression. Rather than take a chance on letting her disease run her life, she decided to pursue the quickest course to treatment possible.
Tune in to learn more about the fabulous care, comfort, and personalized service, and absolve any concerns in hearing more details of the “well-oiled machine” that is HSCT at Clinica Ruiz. Be inspired to treat your diagnosis as an interloper and “dwell on the positive”.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: LetaKrieger.blog Clinica Ruiz, Puebla MS Gym Any List app
Snowflake: Multiple Sclerosis and Lyme Disease HSCT: anticipated by June, 2019 Superpower: body-knowing
How does one come to terms with the brutality of multiple sclerosis? How many disease modifying drugs have caused you significant complications? Do you know what it feels like to live a life without a chronic disease?
After seeing too many doctors that wouldn’t listen, receiving a diagnosis at 13 years young, and spending eleven years trying nearly every disease modifying treatment available, Marlo developed inflammation everywhere in her body that led to countless additional potential diagnoses. Having very few memories of her childhood or of positive experiences with doctors, Marlo has persevered with an admirable, courageous, and brilliant sense of hope for the future.
Tune in to hear more about Marlo’s journey with multiple sclerosis and how she is preparing her mind and body to become the first MS patient treated with HSCT according to the BEAM protocol (currently under special executive review) at the Dana-Farber Cancer Institute in Boston, Massachusetts.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes, Stitcher, or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Dana-Farber Cancer Institute in Boston, Massachusetts Clinica Ruiz, Puebla Aa Maximov Hospital, Moscow Russia
Warrior: Bonnie McKenzie Snowflake: Multiple Sclerosis HSCT: 7.10.18 Superpower: divine positivity
How thick is the fog on your brain? How clearly are you able to think and plan? When gearing up for a significant procedure, how well do you prepare for recovery?
After years of experiencing symptoms without answers until finally receiving a diagnosis of multiple sclerosis in 2016, Bonnie experienced heart complications with her first line of treatment that were exacerbated after abruptly stopping her medication. After finding HSCT as an option, she knew she would need to move quickly in hopes to halt her relapses.
Tune in to hear more about Bonnie’s journey to Clinica Ruiz for HSCT, and the affirmation that mental wellness is just as important - if not more important - than physical wellness. Join the team of supporters that helped her create connections with a community of support close to home, as well as internationally.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources noted: Clinica Ruiz, Puebla Aa Maximov Hospital, Moscow Russia Essential oils Healthy diet
Warrior: Jay Blankenfeld Snowflake: MS Caregiver HSCT: March 18, 2018 Superpower: “Knowledge we could not do it alone”
How do you shift focus from self to other when faced with taking on the role of caregiver? When you ask your neurologist about HSCT as an option for treatment, what is their reaction? Do you have what it takes to construct space for success?
Meet Jay, a proactive planner who made a conscious decision to move past his own emotions to focus on helping his wife navigate her diagnosis of multiple sclerosis and research a best course of action. After learning more about multiple sclerosis, the course of progression, side effects of DMTs, and the scary uncertainties that come with multiple sclerosis, he pushed his wife to understand more about HSCT.
Tune in to hear more about how quickly they moved to pursue HSCT, their experience with Clinica Ruiz in Mexico, strategies for caregiving from abroad, and how Jay was able to create space for his wife and their three children to make their way along the journey of HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: HSCT.blog Clinica Ruiz, Puebla, Mexico Aa Maximov Hospital, Moscow Russia “So they say” manuscript
Warrior: Chris Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy) HSCT: August 14, 2018 Superpower: ability to walk again
Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?
Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.
Tune in to learn more about the back-and-forth Chris experienced along his path to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: GBS/CIDP Foundation: https://www.gbs-cidp.org/
Warrior: Alison Coates Snowflake: AIMS Charity HSCT: Caregiver Superpower: Dedication
Have you considered the possibilities of traveling abroad to pursue HSCT to halt your autoimmune disease? Are you striving to overcome obstacles like funding or researching HSCT?
Meet Alison, a caregiver for her warrior husband who was diagnosed with multiple sclerosis in 2010 and experienced significant declines in a short time. Once they determined HSCT would be the best avenue for treatment, they struggled to be accepted to their local clinic in the United Kingdom. After fundraising to pursue HSCT at Clinica Ruiz in Puebla Mexico, they were finally accepted for treatment in the UK and allocated the dollars already raised to begin AIMS; the world’s first charity to support individuals in their pursuit of HSCT.
Tune in to learn more about how Alison came to co-found AIMS, the world’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources noted: AIMS Charity AIMS Symptom Checker Clinica Ruiz, Puebla, Mexico Aa Maximov Hospital, Moscow Russia
AI: RRMS HSCT: Chicago, scheduled in March 2019 Superpower: walk with God
Where do you find confidence to move forward? How do you take the reins and find the right mindset? Who do you consider to be family?
Join us along Katie’s Hope Journey and learn from this interview with our first HSCT Hopeful. After spending 9 years battling multiple sclerosis, Katie found the mindset and the communal support to tackle HSCT head on. Despite her roller coaster of seeking insurance approval, the denial that led to fundraising and efforts of advocacy, Katie is now scheduled for pretesting and if all goes well, to undergo HSCT in March, 2019.
Tune in and learn strategies for fundraising, answers to lingering questions, and how connecting with other HSCT veterans helped Katie build genuine excitement for HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Personal blog: Katie’s Hope Journey to end her MS End my MS blog: by Anna Wise
This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself
Warrior: Cassidy V. Chapman AI: Multiple Sclerosis HSCT: July 15, 2019 Superpower: Passion for bringing awareness to HSCT
To what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family?
After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers.
With frank conversation about Cassidy's experience seeking disability about the side effects of multiple sclerosis and its' medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy’s scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Rachel Gallery AI: Chronic Inflammatory Demyelinating Polyneuropathy HSCT: Oct 19, 2020 Superpower: Empathy
Do you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support?
After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnose Rachel when IVIG helped to offset some of her most problematic symptoms. After five years of managing her disease with IVIG infusions every two weeks, she found herself facing rapid decline, trying a variety of aggressive treatments including cytoxan and rituxan that failed to help.
Tune in to learn more about the clinical trial at the Colorado Blood Cancer Institute (CBCI) in Denver, and the confidence to get through the myeloablative protocol despite significant complications (namely graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support through the tough times, illuminate invisibilities, and adjust to life with chronic illness, this conversation with Rachel offers practical strategies to make it through some really tough moments along the HSCT path.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Colorado Blood Cancer Institute HSCT Warriors Podcast
Warrior: Erin Schoenlein AI: Multiple Sclerosis HSCT: March 15, 2020 Superpower: energy to help other people
How wide is your view? Do you know what it feels like to be well? For how long have you been distanced?
Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinning challenges into positive opportunities. Although she did not qualify for the clinical trials in the United States, Erin researched her options and found herself at Clinica Ruiz just prior to the start of the global pandemic. Erin distracted herself from the chaotic stress of COVID by surrounding herself in a bubble of staying focused on positivity and gratitude expressed by others around her. During this conversation with Erin, hear more about how her experiences in Mexico and her quarantine upon returning home helped motivate her to find inclusive ways to empower others.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Sail MS Paavitforward.org HSCTWarriors.org
Warrior: DeWayne Durr AI: Multiple Sclerosis HSCT: Oct 29, 2020 Superpower: Confidence
How supported do you feel? To what extent do you think about each step that lies ahead?
Continuing from where we left off in this two part episode, tune in to learn from DeWayne as he shares more about his experience navigating his return to work, changes with his diet, and considerations for health and wellness while in the early stages of recovery from the myeloablative protocol at Cleveland Clinic.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: www.rooftopprayerwarrior.com www.hsctwarriors.org
Warrior: DeWayne Durr AI: Multiple Sclerosis HSCT: Oct 29, 2020 Superpower: Confidence
Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS study, including securing insurance coverage, the staff and his in-patient experiences, as well as logistics and details about the time spent after discharge in a nearby hotel, DeWayne shares so many valuable insights, this interview airs as a two-part episode.
Tune in this week to hear the details about being in-patient at Cleveland Clinic and logistics for after-care in Cleveland, and next week, join us to hear more about DeWayne’s experience with recovery so far.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: www.rooftopprayerwarrior.com www.beat-ms.org www.hsctwarriors.org
Warrior: Vic Bonilla AI: Multiple Sclerosis HSCT: October 2020 Superpower: unbreakable resolve
Have you ever felt like an observer of your life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself?
Within a few months of being diagnosed with multiple sclerosis, Vic was connected with someone who was transplanted in Russia ten years ago and immediately began researching HSCT. Once he made his way to Clinica Ruiz for his treatment, he and his brother tested positive for COVID and opted to quarantine in Mexico before returning to Clinica Ruiz for HSCT. By this time, Vic’s brother needed to return to the US, and thankfully Vic was able to hire a caregiver.
Tune in to learn more about Vic’s experience with his caregiver in Puebla, his journey with the MS symptoms that caught him by surprise, his extensive research into HSCT, how things are faring nearly six-months post-HSCT, and the unexpected outcomes he continues to enjoy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Joceline AI: Multiple Sclerosis HSCT: soon in 2021? Superpowers: doing nothing
How comfortable are you with uncertainty? Are you able to leave the unknown alone? How do you find patience when you find yourself on the brink?
Picking up where we left off in this two-part episode, tune in to learn more about how Joceline reacted to the idea of incorporating a wheelchair as an assistive device, how she continues to manage her multiple sclerosis as she awaits HSCT, and the practices she has learned through various resources and connections. As a nurse’s assistant by training, Joceline continues detailing her journey beyond diagnosis, attempts at treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience with lockdown in the UK while awaiting the Russian border to open.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: MS Tripping on Air Instagram HSCT Moscow HSCT Warriors Podcast HSCT Warriors, Inc.
Warrior: Joceline AI: Multiple Sclerosis HSCT: soon in 2021? Superpowers: doing nothing
How do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?
After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Chi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal’ despite her diagnosis.
Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse’s assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Bates Natural Vision Improvement Exercises Radical Acceptance by Tara Brach Ahna Crum
Warrior: Chloe Zallen AI: Relapsing remitting multiple sclerosis HSCT: Oct/Nov 2020 Superpowers: self-love
Are you able to recognize your limitations? Are you aware of your stressors?
As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncertainties of her MS. When she suddenly had numbness along the entire right side of her body, she began googling her symptoms and weighing the possibilities while awaiting the results of an MRI. Though she received a diagnosis soon thereafter, nearly every neurologist she consulted encouraged the same disease-modifying therapy and after researching the side effects, Chloe opted instead to adopt special diets and a natural path to managing her symptoms.
Tune in and learn more about how Chloe found complete relief from her symptoms while away in New Zealand, find motivation to be your own advocate, and how she found her way to HSCT despite doctors’ and friends’ concerns that she would die. Hear more about her experience in Monterrey and how she was able to stay active and sane despite the global pandemic.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org
Warrior: Christy Miller Kuziensky AI: MS HSCT: February 2021 in Monterrey Superpowers: patience and trust in Clinica Ruiz
Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?
With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body’s capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Chi Gong, tapeworms, and bee sting therapy.
Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy’s journey helps to reinforce the power of networking and sharing connection with others.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org
Warrior: Ovi James AI: PPMS HSCT: February 2021 Superpower: Strength, Bravery, Grit, Courage
When faced with adversity, are you able to advocate for yourself? Are you someone who can find gratitude often? What gifts can you share with the world?
After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi’s goal was to focus on the positive and help her son “see the light at the end of the tunnel” even though she struggled to understand everything that was going on as her family chose not to support her. With the support of various shelters and physical, occupational, and mental health therapies, Ovi was able to focus on healing and learning how to better advocate for herself. She eventually found a rheumatologist who was able to see she was struggling with more than fibromyalgia and scheduled the MRI that led to her multiple sclerosis diagnosis.
Although this interview occurred the weekend that Ovi was preparing to head to Clinica Ruiz in Mexico, it is airing while she is currently undergoing treatment and could use continued support from our HSCT community. Tune in and learn more about Ovi’s journey and how she found strength in being properly diagnosed, and keep such a positive outlook on life and how she turned inward to focus on her gifts in order to actualize the possibilities of pursuing HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Social media YouTube: @ovijames and Instagram: @itsovijames Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org
Warrior: Ali Roberts AI: Multiple Sclerosis HSCT: 11/6/17 Superpower: Gratitude
Our season openers would not be the same without checking in with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, mindset, wellness, and personal challenges to continue promoting wellness, health and longevity. Check in with Ali to reflect on all that has changed during her experience with HSCT recovery. Join us for this informative, authentic, and engaging dialog that highlights the importance of reaching out for help.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: AliStrong: facebook.com/pages/AliStrong HSCT Warriors, Inc.: https://hsctwarriors.org Genomic sequencing: https://yourgenomicresource.com/
As we near the launch of our sixth season, revisit this special episode with our hostess zen Jen and her lifelong friend Jessica of Radically Rooted Yoga and Lifestyle Center in a guided meditation practice to extend gratitude and loving kindness to healthcare professionals and others on the front lines of the covid-19 pandemic.
Founder of Radically Rooted, Jessica Lichaa started exploring the integration of body practices through yoga in 1999 and over time has developed an emphasis on cultivating autonomic regulation through the fascia of the body. The practices led by Jessica have helped many individuals to improve the stress and trauma induced holding patterns within the tissues of the body to cultivate healthier ways of dealing with the emotional responses of life and improve overall well being.
In September of 2016 Jessica Lichaa developed a unique yoga teacher curriculum focused on neuroscience, early childhood psychology, body awareness, mindfulness, and self-compassion practices. She integrated timeless ancient techniques with current research in neuroscience and developed a highly acclaimed yoga teacher training, that not only emphasizes asanas, philosophy and pranayam, but also manual tissue movement to assist the body in accessing the relaxation response, to foster deeper states of homeostasis, and awaken one's immune system to detox the cellular matrix of free radicals.
The guided meditation featured in this episode can be practiced by anyone at any time to find a sense of calm and connection to self and others, and cultivate gratitude for all the healthcare professionals who are caring for so many who are battling covid-19. May we feel safe and protected… may we be happy… may we be healthy… may we be free from pain and suffering.
Feel free to reach out to Jessica anytime for more information or to learn more about the self care fascial work that is discussed in the episode.
Resources: Radically Rooted Yoga and Lifestyle Center JessicaLichaa@liveradicallyrooted.com
Warrior: Kevin Keplinger Snowflake: RRMS HSCT: February 23, 2017, Northwestern Memorial Hospital Superpower: Novena to St. Jude
When facing the unknown, are you curious about possibilities or do you fear uncertainties? What is the part of your journey that has become too familiar? How can we support each other to mobilize for different outcomes?
If you’ve ever been curious to know more about potential complications or side effects associated with HSCT, meet Kevin, who faced nearly any possible challenge you could possibly face (e.g. failed mobilization, infection in the blood) with HSCT, including travel across the globe to Singapore. Despite facing such significant challenges, tune in to learn more about Kevin’s journey to halt his MS and his continued dedication to recover his physical abilities, and promote HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Ohio Facebook group: facebook.com/groups/OhioHSCTgroup/ Zen Jen’s blog: Haltmyms.com WCPO Cincinnati ABC affiliate: wcpo.com
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
zWarriors: 'Zen' Jen & Sara Leah Snowflake: RRMS HSCT: October 18, 2017, Northwestern Memorial Hospital Superpower: Zen
Do you embrace life’s challenges with open arms? One step at a time? As you find your way along your journey, do you pause to reflect in the moment and express gratitude for those who are along with you?
Learn more about the journey of our very own “Zen” Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview protocol, enjoy this conversation from the lens of someone curious to know more about HSCT, in celebration of Jen’s one-year HSCT birthday.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: haltmyms.com hsctwarriorspodcast.com HSCT at Hoxworth Blood Center, University of Cincinnati HSCT at Clinica Ruiz, Mexico
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Snowflake: RRMS HSCT: July 11, 2018, Northwestern Memorial Hospital Superpower: Connections
How positive is your outlook? How empowered do you feel by your faith and innate resilience? When life seems scattered like a puzzle, how do your pieces fit together?
Tune in to learn more about how Cecilia embraces a positive mindset, regular mantras, and her lens of love to face any challenge that presents itself. Within the first few weeks post-HSCT, Cecilia found strength in physical therapy, resilience in connections and sharing her experiences, and even found the balance to get back to work part-time.
Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers
Resources: Affirmations by Louise Hay
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Anna Wise Snowflake: RRMS HSCT: 2/23/17 at Northwestern Memorial Hospital Superpower: Running
How bright is the light you shine on your present situation? What are you committed to, without any doubts or hesitation, to achieve your “next best life”?
After hearing a “no” from her first attempt at HSCT, Anna remained open to try anything (including experimenting with mesenchymal stem cell therapy) to cure her MS. She found herself on Medicare and full-time disability for two years at the end of her late-thirties and after failing four disease-modifying therapies (DMT) and facing the side-effects of yet another DMT, Anna chose to jump at the chance to revisit her application at Northwestern Memorial.
Tune in to hear more about Anna’s journey with Multiple Sclerosis and the effort she made to prevent her disease from progressing; the “rollercoaster” peaks and valleys of post-HSCT recovery; strategies to battle the chemotherapy-related fatigue, regain confidence, and embrace energy from physical exercise in simple environments; and pursue the best life possible, starting with HSCT.
Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Jesus Calling: Everyday Devotions by Sarah Young Anna’s blog: https://endmyMS.com
Warrior: Julie Eberhardt Snowflake: RRMS HSCT: February 19, 2018, Northwestern Memorial Superpowers: Empathy and ability to “not sweat the small stuff”
Are you a goal-oriented person who likes to create plans and back-up plans to the plans for every aspect of life? Have your plans been significantly detoured by your experience with autoimmune disease?
As a young warrior with brilliant energy, Julie shines her light on the importance of managing stress in order to negotiate the realities of unpredictability. She very quickly realized the reality that as a progressive disease, MS created daily fear that “the next day could have been the day when I woke up and couldn’t walk again.” Within two short years of diagnosis in 2016, Julie felt completely defeated by MS until she embraced hope as a mantra to navigate life and hasn’t let it go throughout her HSCT journey. Tune in to learn more about Julie’s shifting perspectives and find wisdom that might take others a lifetime to learn.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Blindsided, Richard Cohen Chasing Hope, Richard Cohen Julie’s blog: MakingSenseofMS.com
Warrior: Karin Snowflake: Systemic Lupus HSCT: December 10, 2015, Northwestern Memorial Superpower: Empathy
Do you tend to put yourself last on your to-do list? Have you ever been at the point in your life when you realize, “This is for the birds!” or feel ready to get on with it [life] already?
Karin’s experience with Systemic Lupus left her bandaged and barely recognizable. Failed medication after another, she realized that her autoimmune disease was “for the birds.” Despite the fear of being away from her busy life for too long, Karin found herself tired of her disease and encourages listeners to “take care of number one first!”
Tune in to learn more about how Karin harnessed positive energy during HSCT and shifted to a new normal of patience, appreciation for the things she used to take for granted, and found the strength to get back to work within just 2 months post-HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Ron Gabrielli Snowflake: RRMS HSCT: May 6, 2017, Puebla, Mexico Superpower: Advocacy for HSCT
Have you ever learned something that left you at a loss for words? Found yourself tied to the railroad tracks looking for a way to stop the oncoming train?
Meet Ron, a warrior who invested in the “short term pain for long term gain” of HSCT and found courage to face his fears, doubts, and misconceptions in order to commit to Clinica Ruiz in Puebla Mexico. As an American citizen residing in Canada, he unexpectedly found an extended family and friends in Mexico.
Ron leaped into his journey without looking back, continues to grow his family by embracing a positive outlook, and focusing on the small things to appreciate in life. Tune in to hear Ron’s tips and tricks, encouragement to pursue objective research, and strategies to support a healthy outlook in recovery.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Ron’s blog: ronniesmstrek.mozello.com Heavy Metal testing: https://www.doctorsdata.com/urine-toxic-metals/ Cannabidiol oil: https://cbdistillery.com 1:1 CBD:THC oils
Warrior: Denise Bishop Snowflake: Stiff Person Syndrome HSCT: 9/12/17, Chicago Superpower: Increased empathy
Have you ever found yourself distracted by concern for the people in your life that are stressed about your condition? Do you question whether the resources you find when researching your condition are of comparable quality to the resources your doctors can access? Have you learned how to embrace the courage to make your own decisions in healthcare?
Be inspired to take charge of your health when you meet Denise, a warrior who tapped into her 35 years of service as a trauma-care nurse when diagnosed with Stiff Person Syndrome. Once she started researching the disease, eventual progression, treatment options (e.g. IVIG, plasmapharesis, valium) and their respective side-effects, she informed her neurologist that HSCT would be the only option forward she found to be acceptable.
Tune in to learn strategies for handling the logistics of HSCT, including the importance of building a strong support team, knowing your limits, and finding a purpose. Denise shares insights that help to promote her mental, emotional, and physical recoveries.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Dave Carey Snowflake: RRMS HSCT: 9/11/17, Chicago Superpower: Perspective
When you pause to reflect about what has changed during a year, what do you see or feel? If you take time to recognize your own personal successes, have you ever hesitated to share what you find with others?
Meet Dave, a warrior who tried nearly every treatment available to treat his multiple sclerosis before finally receiving HSCT November 11, 2017 at Northwestern Memorial Hospital. Dave used a cane and experienced regular active relapses before transplant so he was ready for a life-changing event. As he worked to get things in order and prepare for the worst, he ended up surprised when Dr. Burt said to him, “I can help you” without caveat.
Dave approached HSCT with a commitment to “not fight anything” except his eagerness to get back to normal once he returned home. Listen to Dave’s strategies for keeping a positive mindset, accept all aspects of the process, “take a beat” and embrace the emotions including the difficult, stressful, or uncomfortable ones. Dave’s story will inspire you to “like yourself more,” embrace family and friends, develop an affinity for unexpected relationships, and experience life with a newfound perspective.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resource: Bradberry, T., & Greaves, J. (2009). Emotional Intelligence 2.0. TalentSmart. ISBN-10: 0974320625
Warrior: Ellie Baum Snowflake: RRMS HSCT: 6/16/16, Chicago Superpower: Tuning into the body
Do you know the importance of truly understanding your body? Can you get comfortable with letting go of expectations?
Meet Ellie, a warrior diagnosed with multiple sclerosis who received HSCT at Northwestern Memorial Hospital in June, 2016. Ellie initially found HSCT in 2003 but didn’t find herself ready for the procedure until 2015 after a relapse forced her to stop working.
Determined to “stay the course” and not rush into anything, hear more about the benefits of tuning into and getting to know your body throughout the recovery rollercoaster. Ellie shares some of the strategies she uses to tune in and focus on breathing, healing, and well-being.
Tune in to hear more about Ellie’s journey to embrace uncertainty, learn strategies to support the nervous and autonomic systems, and better get to know your body, nutrition, balance and well-being. Continue following Ellie and her abundance of gratitude on her blog: http://HSCTforMS.com
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources noted: HeartMath: https://www.heartmath.com Jiyo: https://jiyo.com/home YogaGlo: http:www.YogaGlo.com
Warrior: Dustin Fairchild AI: Relapsing Remitting Multiple Sclerosis HSCT: 4/19/17, Chicago Superpower: Zen
Do you find yourself struggling to adapt with shifting realities of autoimmune disease? Are you looking to find peace in your life? Or get inspired by transformational journeys?
Meet Dustin, a warrior diagnosed with multiple sclerosis who received HSCT at Northwestern Memorial Hospital, four years after his initial diagnosis. His abilities were rapidly declining, he relied on a cane to walk, and was eager to find a “cure for MS.”
His resolve helped him let go of the need to be in control and stop trying to plan for future uncertainties. He was able to allow Dr. Burt to “take the reigns,” and completely trusted the nurses and staff throughout the HSCT process. Hopefully Dustin finds continued healing and someday soon he will be able to accomplish all that he feels ready for.
Tune in to hear Dustin’s journey with HSCT, his secrets to staying positive and strategies to cope during the two-week-plus long hospital stay where “you’re never alone, but you’re always lonely.”
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Ali Roberts Snowflake: RRMS HSCT: 11/6/17, Chicago Superpower: Motivation
Have you ever found yourself on a road you’ve never been down before? Found strength to navigate a pathway that is far from straightforward? Uncovered faith where you never believed it could exist?
Meet Ali, a warrior diagnosed with multiple sclerosis who “just doesn’t settle well for [being told] ‘there’s nothing left we can do’.” Before she received HSCT at Northwestern Memorial University, her biggest challenges with MS created extreme stomach issues that restricted her diet and for 11 years, she “couldn’t eat a single meal without getting sick.”
Through extensive research, Ali fought her fears of chemotherapy, connected with some beautiful souls, and found tremendous strength to power through an extraordinarily challenging HSCT experience. Her journey helped her shift from a life “which was just surviving” to embrace positivity, “what inspires and lights me on fire” without fear, and her unique law of attraction.
Tune in to hear Ali’s transformation as her story offers “hope to people struggling with autoimmune disease... to know that there’s an option out there... that [is] getting safer and safer all the time.” Ali offers brave inspiration in sharing a piece of the “bunnies and tiaras” warriors’ story, honoring her soul-sisters and the legacy of HSCT advocacy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: John Taylor AI: Multiple Sclerosis HSCT: September 2019 at Northwestern Superpower: Appreciation
Have you ever tried to describe the sensation of severe pain, despite knowing that you’re also physically numb? When side effects and risk outweigh the good, how do you make a choice? How do you feel when selected for the chance of a lifetime, knowing others have to miss that chance?
After years of living with symptoms considered insignificant, John finally received a diagnosis of multiple sclerosis in 2010 from his third opinion doctor. While the first disease modifying therapy seemed to work for nearly a decade, just as John began to fear a future with little hope about his new normal, his wife stumbled upon HSCT in time for him to be treated in Dr. Burt’s last cohort before sabbatical.
Tune in and learn more about John’s experience with loss of balance, shooting pains, burning sensations, optic neuritis, and other symptoms that he experienced with multiple sclerosis.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Patient care manuals for post-HSCT Research articles
Warrior: Kim Rodning AI: Scleroderma HSCT: September 4, 2018 at Duke University Medical Center Superpower: perseverance, patience, and perspective
Do you practice daily affirmations of positivity? Does your self talk promote healing or judgment? How does hearing the stories of other Warriors help you?
Having encountered the possibility of HSCT by chance, Kim explored more about the research and program for Scleroderma patients at Duke University. Thankfully, she found HSCT just before her lungs hardened to the point where she wouldn’t have qualified.
Tune in and learn more about her experience and symptoms of scleroderma, the aid she received to fight for insurance coverage, and the team of caring angels at Duke that helped motivate Kim to fight back.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Facebook @KimberlyRodning
Warrior: Lynn Rogers AI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) HSCT Hopeful: Superpower: widened lens
Have you ever worried about asking people for help when their investment isn't a sure thing? How do you define barriers to treatment for your autoimmune disease?
As a triathlete, crossfit-er, and marathoner preparing for an Ironman race, imagine the frustration when Lynn found herself paralyzed after two weeks of testing that led to no answers. Having a career in biomedical engineering with a focus on helping individuals with motor-recovery, Lynn was very surprised to find herself struggling with the same acute neurological issues as her patients.
Tune in to learn more about her journey with symptoms that were not “textbook” and how the diagnostic testing not designed to pick up subtleties rendered her borderline, ultimately prolonging a diagnosis. Learn more about Lynn's efforts to find answers and collaborate with her doctors over the course of three years to develop a plan of action that is leading her to pursue HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Clinica Ruiz https://hsctmexico.com
Warrior: Sagirah Ahmed Norris AI: Multiple Sclerosis HSCT: January 2020 Superpower: flexibility
Are you someone who prefers to schedule a plan for every detail in life? Do you
After first being diagnosed, Sagirah found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run marathons. Once her symptoms began matching what her doctor projected for her years down the road, she happened upon HSCT by chance while in Europe. After returning home, Sagirah did more research and then talked with her doctor, only to be told that HSCT wasn’t an option for her, particularly the kind of HSCT that involved leaving the country.
Tune in to learn more about how Sagirah defined her path to HSCT, the flexibility she gained throughout her experience, and whether she qualified for the Boston Marathon even before her one-year HSCT birthday.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Clinica Ruiz HSCT Warriors, Inc.
Warrior: Brooke Slick AI: Multiple Sclerosis HSCT: 2013 Superpower: Surrender
Are you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen?
Revisit Brooke’s journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influence of mindset, and the inspirations she has found with persevering in her battle with MS beyond HSCT.
Tune in to check-in with our dear friend, Brooke and hear more about how she continues to support others along their journey to HSCT and celebrate the gifts of community and service to others.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: The MS Gym Podcast The MS Gym HSCT Moscow HSCT Warriors, Inc.
Warrior: Felicia Merritt AI: Progressive Multiple Sclerosis HSCT: August 2020 Superpower: Feeling invincible
Have you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace?
Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an intense crossfit workout, Felicia hoped she could laugh things off until she checked herself into the hospital. Her doctors referred her to Ohio State University and once surrounded by a medical team for a few days, Felicia was diagnosed with multiple sclerosis in 2018.
Tune in to learn more about HSCT despite COVID and details about the level of detail, treatment and care Felicia received at Clinica Ruiz, and all that she has gained in just the first couple of weeks post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Facebook blog page
Warrior: Marlo Kalb AI: Relapsing Remitting Multiple Sclerosis HSCT: confidence to fight back Superpower: 9.30.19
How will you face the many curves that lie ahead?
Diagnosed at just 13 years old, Marlo found herself eager for HSCT after doing research and listening to this podcast. First interviewed as a HSCT Hopeful during Season 2, Marlo shared her journey to become the first person transplanted in Boston. After facing administrative issues, delays, and opinions not favorable to her candidacy, tune in to learn more about how Marlo faced the multiple twists and turns that eventually led her to Clinica Ruiz. Join us in celebrating Marlo’s one-year stem-cell birthday and how HSCT has impacted her after spending 13 years living with MS.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: https://hsctmexico.com https://HSCTWarriors.org
Warrior: DeWayne Durr AI: Relapsing Remitting Multiple Sclerosis HSCT: scheduled for September, 2020 Superpower: prayer and understanding
How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?
After DeWayne researched the disease modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration to be considered for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, details of participating in the clinical trial, and COVID.
Tune in and learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _______________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Wahl’s Protocol Rooftop Prayer Warriors
Warrior: Michelle Webb AI: Relapsing Remitting Multiple Sclerosis HSCT: 5/19 Superpower: Compassion and understanding
Are you someone to believe that everything happens for a reason? How often does your experience with disease cancel plans with friends and family? How often are you kind to your body and mind?
After realizing the eighth disease modifying therapy she tried (since 2011) wasn’t helping her feel any better, Michelle began looking into options. As a person who doesn’t trust blindly, hear more about how Michelle - also, a high school friend of Jen’s - gained information when she found herself seeking guidance about next steps, and found the courage to move forward despite her doctor’s opinion.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: HSCT Warriors, Inc. Northwestern Memorial Hospital
Warrior: Ron Gabrielli AI: Multiple Sclerosis HSCT: 5/6/17 Superpower: Hope
How inspired are you to help others? How important are caregivers in your journey with disease?
After enjoying such an incredible experience at Clinica Ruiz, Ron and his wife have spent countless hours connecting with individuals to answer questions and share support to help people make informed decisions about HSCT. While all Ron cares about is paying forward the support he received in his experience, he joins so many others post-HSCT who question the systems that keep HSCT out of reach for so many.
Tune in and learn more about the various strategies that Ron has tried out during his three plus years of recovery, how he managed to check his pride, and all the hope he holds on to as he continues reconciling with the realities of recovery. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Warrior: Chelsey Bell AI: RRMS HSCT: 7/11/18 Superpower: Self awareness
How often do you find time to reflect on what works for your body? Have you been able to truly appreciate time with yourself? How does it feel to connect with someone else over commonalities?
Sharing insights to her solo experience getting to Moscow, Chelsey offers so much inspiration for the importance of mindset, taking time to figure out what works, and finding lessons from her younger self, and accepting challenges without holding on to frustration. With updates on her fundraising experience and securing an Alinker to promote her recovery, Chelsey shares an abundance of wisdom and resources.
Tune in to hear more about Chelsey’s journey to Moscow for HSCT and how she is faring after two years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Eye mask Alinker Nonprofit: Move, Live, Prosper
Warrior: Jan-Marie AI: RRMS HSCT: 6/20 Superpower: Patience
How often do you take doctors’ first opinions without questioning? How often do you take time for self-care?
Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.
Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks post-transplant.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Calm app
Have you experienced pain so severe it has robbed you of living? How do you find courage? What choices can you find each day?
Our season openers would not be the same without checking in with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, mindset, wellness, and personal challenges to continue promoting wellness, healing and longevity. Based on Ali’s experience with multiple sclerosis that included eleven years of digestive disruption, we discuss preparing for HSCT through diet and developing a healthy mindset. Join us for this informative, authentic, and engaging dialog
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Resources: Genomic sequencing: https://yourgenomicresource.com/
Warrior: Jess Green AI: Multiple Sclerosis HSCT: February 2019 at St. Vincent's Hospital, Sydney Superpower: Love and compassion from others
When your doctors run out of options, are you ready to suggest a course of action? Despite the scary struggle or the bad times, can you find the goodness? How strong is your support system?
With a relatively quick diagnosis of Multiple Sclerosis after her first sign of an issue, Jess researched treatment options and found her doctors at a loss for how to combat her relapses after she failed three different disease modifying drugs in just two years. She encouraged her doctors to send her records to the team running the HSCT Clinical Trial at St. Vincent’s Hospital in Sydney and suddenly found herself accepted to proceed with HSCT.
Tune in and learn more about the importance of connections, compassionate caregivers, and the struggle that Jess experienced when she experienced an allergic reaction during the BEAM protocol with Dr. John Moore and Dr. Barbara Withers at Kinghorn Cancer Centre in Sydney Australia.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Lydia Rosenbaum AI: Crohn’s Disease HSCT: August 2002 at Northwestern Memorial, Chicago Superpower: Empathy and self-efficacy
How often do you push your limits? After spending time planning to die, how do you shift to celebrate success with surviving? How do you find compassion for people who have never walked in your shoes?
Despite suffering extreme complications with Crohn’s disease that kept her in and out of the hospital through multiple surgeries and dangerous fevers, Lydia woke up after surgery one day and was suddenly told “you cannot eat”. Before she turned 30, on medical disability, living in the hospital more than out and realizing she was on palliative care, Lydia found herself advocating for consistency and questioning the ethics of doctors and insurers.
Having prepared to face death from her aggressive form of Crohn’s, Lydia was surprised to find herself feeling so isolated after HSCT when she realized she could prepare to live. Join us and learn more from Lydia about her battle and the path that led her through the Phase II Clinical Trial as one of the very first patients treated with HSCT for Crohn’s Disease by Dr. Burt at Northwestern.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tamara Netzel AI: Multiple Sclerosis HSCT: Dec. 2019, Monterrey Mexico Superpower: Truth
Have you ever been close to gaining resolution, only for it to slip through the cracks? How long has it taken for you to feel supported by your doctors? What would it look like if you pledged to help just one person get to HSCT?
After a long road to securing the diagnosis of multiple sclerosis, the first disease modifying treatment that Tamara tried eventually sent her liver into failure. the first two doses of her second shot at a DMT created bladder problems and damage to her ninth cranial nerve that caused extreme pain. Over the course of ten months as she fought for answers, Tamara was introduced to cannabis and found it to be her only relief. Finally after a third DMT proved ineffective, Tamara found research on HSCT and by connecting with other HSCT Veterans about their experience with Clinica Ruiz, and was ultimately convinced to travel abroad where she found better care than she had ever before received.
Join us to kick off national Multiple Sclerosis awareness month with this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation, fighting to advocate for yourself, and taking calculated risks to avoid desperation in order to find quality care or sense of community.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources:
McDonald Criteria Wahl’s Diet CruelConsequences.org Dateline NBC HSCT Warriors, Inc. IG blondewndrwmn
Warrior: Craig Witkowski AI: Multiple Sclerosis HSCT: September 2019 in Puebla Superpower: Patience
Do you find it tough to maintain patience with yourself or doctors? How easily do you find a positive mental outlook? How tightly do you hold on to hope?
After being on a first-line drug to hold off initial onset of his MS symptoms, Craig found benefit for a few years until he stopped the medication due to unwelcome side effects. After changing careers, he spent some time without any sign of the disease until Craig was suddenly blind-sided by an experience while driving that left him nearly paralyzed. Without much explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch the continued progression and caused additional unwelcome side-effects.
Craig researched more about stem cell treatments because his doctors could only offer vague uncertainties and although he found Dr. Burt’s clinical trial at Northwestern, after spending a year fighting insurance to pursue HSCT, Craig learned his disease had progressed enough to leave him ineligible for the study criteria. Not willing to give up hope, Craig traveled from Chicago to Texas for a presentation about Clinica Ruiz and was sold on the possibilities that HSCT at Clinica Ruiz offered.
Tune in and learn more about Craig’s unique challenges, fundraising efforts, power of patience, tremendous support of family and friends, and will to find his way to HSCT at Clinica Ruiz in Puebla, Mexico.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Meghan Newell Davis AI: Scleroderma HSCT: 1/22/19 at Duke University Superpower: Unbreakable
Have you ever watched a doctor google your symptoms to find help? How often do you take the little things in life for granted? As you move through life, do you take caution not to 'poke the bear'?
Celebrating a son just one year younger than her new immune system, Meghan offers our listeners a glimpse into life with a very aggressive form of scleroderma and her experience with HSCT at Duke University. The highly competitive-Ironman-Nutritionist suddenly found her body to be suddenly sore, stiffening and stonelike. As she continued struggling to hide invisible symptoms that were physically shutting down her body, she spent weeks visiting doctors, researching her symptoms, and experimenting with various alternative remedies to find some relief.
Tune in and hear more about the freight train that wrecked Meghan’s capacity to function in everyday life despite not looking sick. Once she was connected with a rheumatologist, Meghan finally had diagnoses of multiple autoimmune diseases and was fast-tracked to HSCT at Duke University. Through HSCT Meghan gained lifelong warrior friends and family, including her doctors, nurses and care team and shares so many valuable insights!
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Meghan's race to HSCT Meghan_fit4life on Instagram Dr. Twining, Myrtle Beach Dr. Baker Frost, Medical University of South Carolina
Warrior: Jess Faulds AI: Multiple Sclerosis HSCT: July 2019 in Calgary, CA Superpower: Sensation and mental strength
How do you react when people stare at you? At what age did you feel confident about managing your options with autoimmune disease? Where do you find faith in humanity?
Being diagnosed with MS at 15 years young certainly wasn’t a walk in the park for Jess, but it motivated her to keep active and persistent with staying informed about her options. As someone raised to value movement and nutrition, Jess was sure to incorporate these cornerstones throughout her experience with HSCT.
Tune in and learn more about her routines that promoted a quick rebound from HSCT and the holistic approach to HSCT care and treatment at the clinics in Canada in Calgary and Ottawa.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
_________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Wrap Me Cool wraps Jess Faulds on Instagram: alltherightbites MS Society of Canada
Warrior: Ali Roberts AI: Multiple Sclerosis HSCT: 11/6/17 Superpower: Gratitude
Do you believe in the power of self-talk? That the words you say to yourself become the narrative that you fulfill? Where do you find yourself bringing attention?
Revisit our Season Four opener and conversation with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, stress, shingles, mindset, wellness, and personal challenges to continue promoting wellness, healing and longevity. Tune in and learn how Ali navigated wellness through the flu and shingles at two years post HSCT, then take away some valuable insights about life that she shares from her coaching perspective.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Barry Goudy AI: Relapsing Remitting Multiple Sclerosis HSCT: August, 2003 at Northwestern in Chicago Superpower: Belief
How do you place a value on health? When it comes to solutions for your experience with disease, how do you determine whether a treatment is good enough? How far are you willing to go with research?
Despite the devastation after initially failing requirements for the clinical trial protocol, Barry remained persistent to receive HSCT. Once he was accepted for a new study protocol, Barry geared up for halting the progression and enjoyed such a great experience that he has become an ongoing champion for HSCT.
Tune in and hear more about how he tried his best to broadcast the hope and opportunity of HSCT with others, and even testified in front of the United States Congress. This final episode of Season 3 also offers insight to the latest at Northwestern and updates about the signature “Talk to a Warrior” program of the HSCT Warriors, Inc. nonprofit.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Denise Bishop AI: Stiff Person Syndrome HSCT: 9/12/17, Chicago Superpower: increased empathy
How often do you listen to the voice in your head? How much can you afford to endure? What are your strategies to sort through all that needs attention?
Join us to check in with Denise following her two-year check up post-HSCT in Chicago. Learn more about the unexpected twists and turns along her ongoing rollercoaster, and how Denise faced the fluctuations including another autoimmune diagnosis, a traumatic fall, and tragic loss of her grandson.
Despite all the setbacks she has faced, Denise holds firm to a positive attitude and resilient mindset that is inspiring for any warrior. Tune in, find connection, and share in the sense of community.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy) HSCT: August 14, 2018 Superpower: ability to walk again
Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?
Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.
Tune in to learn more about the back-and-forth Chris experienced along his path of diagnosis with CIDP that led him to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: GBS/CIDP Foundation: https://www.gbs-cidp.org/
Warrior: Ahna Crum AI: Multiple Sclerosis HSCT: April, 2016 in Moscow Russia Superpower: Shapeshifting
What motivates you to find curiosity in life? Have you ever been let down by a one-size-fits-all approach? How equipped are you to adapt?
After suffering significant relapses of her MS from an early age, Ahna found HSCT in her late twenties through research trying to avoid moving into an assisted living facility. With great determination and a positive mindset, Ahna found Moscow to be a welcoming, supportive place.
As someone who leaped into HSCT without any doubts, Ahna found the recovery rollercoaster to be quite the challenge. Tune in to find out more about the post-transplant complications that Ahna faced, how she was able to find her own solutions to heal her body, and how she found her passion to become a partner for HSCT warriors along their journeys.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Restorative Nutrition by Ahna Crum What the Heck Should I eat? by Mark Hyman Psychobiotic Revolution: Mood, Food, and the New Science of the Gut-Brain Connection by Scott C. Anderson MS Gym Podcast
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tamra Minch AI: MS Caregiver HSCT: April 7, 2019 Superpower: Humility
Are you able to make time for yourself when caring for others? When faced with the uncertainties in life, what do you focus on? How does resiliency inform your outlook?
When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT.
Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Katie Hominsky AI: MS HSCT: 4/15/19, Chicago Superpower: Confidence
Who has your back when things get tough? When facing struggles in life, where do you seek support? How do you find hope and understanding?
Tune in for this post-HSCT update from Katie, our first hopeful interviewed about her Hope Journey to HSCT and hear more about the ups and downs of her recovery rollercoaster at nearly six months post-transplant. In addition to simply catching up, Katie offers important updates on her fundraising initiatives and support strategies, and shares more about her ongoing Hope Journey.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tracey Rossi AI: Multiple Sclerosis HSCT: August 2018 Superpower: Motivation
Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down?
As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Warrior: Paul Wheeler AI: Secondary Progressive Multiple Sclerosis HSCT: April 10, 2017 Superpower: Dancing
Have you experienced the compassion of humanity? Is your approach to life more of the “cup half-empty” or “half-full” mindset? Just how bright is your outlook?
As someone who prefers “research to the nth degree” about medical decisions, Paul weighed the odds of HSCT and determined them better than the 100% chance his disease would progress. Thanks to HSCT, Paul has not only found clarity of mind without the burden of “cog fog” he recognizes that other unexpected improvements he has been so grateful for are not guaranteed.
Tune in to learn more about how Paul rallied the support of his family and community to help raise money in order to get from the UK to Mexico, including a “really weird” journey made of “a marathon a day” spanning 250 miles in his wheelchair. Enjoy this inspiring story of energetic joy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Jarrod Schlipf AI: Multiple Sclerosis HSCT: November 2014 Superpower: Patience
How much effort/time/money has been spent battling autoimmune disease? What is your contribution to the outcomes that you are seeking? How committed are you to making time to build habits that nourish your mind, body and soul?
In this replay from season three, learn more about this 17 year experience with MS to an auto accident that injured his neck, Jarrod continues to find improvements post-HSCT through reducing a majority of his stress, finding the importance of sleeping and rest, and committing to movement and exercise.
Jarrod’s message that “You get out of HSCT… what you put into HSCT” inspires shifts in thinking and movement of both the mind and body. Recognizing the challenges that he might still face through ongoing recovery, by embracing a positive mindset and gratitude Jarrod is able to find patience and space to focus on getting better and living his second chance at life.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: everyone Superpower: Loving kindness meditation
Have you wanted to express gratitude for all the healthcare professionals who are on the front lines, responding with care for individuals battling life threatening illness? Do you know how to find calm within a state of stress and anxiety?
In this special episode, join our host zen Jen and her lifelong friend Jessica in a guided meditation practice to extend gratitude and loving kindness to healthcare professionals and others on the front lines of the covid-19 pandemic. Set against original music composed by Billy Alletzhauser, this brief practice was designed to promote calm, cultivate mindfulness, and is appropriate for anyone to practice.
Founder of the Radically Rooted Yoga and Lifestyle Center, Jessica Lichaa started exploring the integration of body practices through yoga in 1999 and over time has developed an emphasis on cultivating autonomic regulation through the fascia of the body. The practices led by Jessica have helped many individuals to improve the stress and trauma induced holding patterns within the tissues of the body to cultivate healthier ways of dealing with the emotional responses of life and improve overall well being.
In September of 2016 Jessica Lichaa developed a unique yoga teacher curriculum focused on neuroscience, early childhood psychology, body awareness, mindfulness, and self-compassion practices. She integrated timeless ancient techniques with current research in neuroscience and developed a highly acclaimed yoga teacher training, that not only emphasizes asanas, philosophy and pranayama, but also manual tissue movement to assist the body in accessing the relaxation response, to foster deeper states of homeostasis, and awaken one's immune system to detox the cellular matrix of free radicals.
The guided meditation featured in this episode can be practiced by anyone at any time to find a sense of calm and connection to self and others, and cultivate gratitude for all the healthcare professionals who are caring for so many who are battling covid-19. May we feel safe and protected… may we be happy… may we be healthy… may we be free from pain and suffering.
Feel free to reach out for more information or to learn more about the practices or music highlighted in this episode. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Guided meditation led by JessicaLichaa@liveradicallyrooted.com
Warrior: John Taylor AI: Multiple Sclerosis HSCT: September 2019 at Northwestern Superpower: Appreciation
Have you ever tried to describe the sensation of severe pain, despite knowing that you’re also physically numb? When side effects and risk outweigh the good, how do you make a choice? How do you feel when selected for the chance of a lifetime, knowing others have to miss that chance?
After years of living with symptoms considered insignificant, John finally received a diagnosis of multiple sclerosis in 2010 from his third opinion doctor. While the first disease modifying therapy seemed to work for nearly a decade, just as John began to fear a future with little hope about his new normal, his wife stumbled upon HSCT in time for him to be treated in Dr. Burt’s last cohort before sabbatical.
Tune in and learn more about John’s experience with loss of balance, shooting pains, burning sensations, optic neuritis, and other symptoms that he experienced with multiple sclerosis.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Patient care manuals for post-HSCT Research articles
Warrior: Kim Rodning AI: Scleroderma HSCT: September 4, 2018 at Duke University Medical Center Superpowers: perseverance, patience, and perspective
Do you practice daily affirmations of positivity? Does your self talk promote healing or judgment? How does hearing the stories of other Warriors help you?
Having encountered the possibility of HSCT by chance, Kim explored more about the research and program for Scleroderma patients at Duke University. Thankfully, she found HSCT just before her lungs hardened to the point where she wouldn’t have qualified.
Tune in and learn more about her experience and symptoms of scleroderma, the aid she received to fight for insurance coverage, and the team of caring angels at Duke that helped motivate Kim to fight back.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Facebook @KimberlyRodning
Warrior: Jess Green AI: Multiple Sclerosis HSCT: February 2019 at St Vincent's Hospital, Sydney Superpower: Love and compassion from others
When your doctors run out of options, are you ready to suggest a course of action? Despite the scary struggle or the bad times, can you find the goodness? How strong is your support system?
With a relatively quick diagnosis of Multiple Sclerosis after her first sign of an issue, Jess researched treatment options and found her doctors at a loss for how to combat her relapses after she failed three different disease modifying drugs in just two years. She encouraged her doctors to send her records to the team running the HSCT Clinical Trial at St. Vincent’s Hospital in Sydney and suddenly found herself accepted to proceed with HSCT.
Tune in and learn more about the importance of connections, compassionate caregivers, and the struggle that Jess experienced when she experienced an allergic reaction during the BEAM protocol with Dr. John Moore and Dr. Barbara Withers at Kinghorn Cancer Centre in Sydney Australia.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Lydia Rosenbaum AI: Crohn’s Disease HSCT: August 2002 at Northwestern Memorial, Chicago Superpower: Empathy and self-efficacy
How often do you push your limits? After spending time planning to die, how do you shift to celebrate success with surviving? How do you find compassion for people who have never walked in your shoes?
Despite suffering extreme complications with Crohn’s disease that kept her in and out of the hospital through multiple surgeries and dangerous fevers, Lydia woke up after surgery one day and was suddenly told “you cannot eat”. Before she turned 30, on medical disability, living in the hospital more than out and realizing she was on palliative care, Lydia found herself advocating for consistency and questioning the ethics of doctors and insurers.
Having prepared to face death from her aggressive form of Crohn’s, Lydia was surprised to find herself feeling so isolated after HSCT when she realized she could prepare to live. Join us and learn more from Lydia about her battle and the path that led her through the Phase II Clinical Trial as one of the very first patients treated with HSCT for Crohn’s Disease by Dr. Burt at Northwestern.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tamara Netzel AI: Multiple Sclerosis HSCT: Dec. 2019, Monterrey Mexico Superpower: Truth
Have you ever been close to gaining resolution, only for it to slip through the cracks? How long has it taken for you to feel supported by your doctors? What would it look like if you pledged to help just one person get to HSCT?
After a long road to securing the diagnosis of multiple sclerosis, the first disease modifying treatment that Tamara tried eventually sent her liver into failure. the first two doses of her second shot at a DMT created bladder problems and damage to her ninth cranial nerve that caused extreme pain. Over the course of ten months as she fought for answers, Tamara was introduced to cannabis and found it to be her only relief. Finally after a third DMT proved ineffective, Tamara found research on HSCT and by connecting with other HSCT Veterans about their experience with Clinica Ruiz, and was ultimately convinced to travel abroad where she found better care than she had ever before received.
Join us to kick off national Multiple Sclerosis awareness month with this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation, fighting to advocate for yourself, and taking calculated risks to avoid desperation in order to find quality care or sense of community.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: McDonald Criteria Wahl’s Diet CruelConsequences.org Dateline NBC HSCT Warriors, Inc. IG blondewndrwmn
Warrior: Craig Witkowski AI: Multiple Sclerosis HSCT: September 2019 in Puebla Superpower: Patience
Do you find it tough to maintain patience with yourself or doctors? How easily do you find a positive mental outlook? How tightly do you hold on to hope?
After being on a first-line drug to hold off initial onset of his MS symptoms, Craig found benefit for a few years until he stopped the medication due to unwelcome side effects. After changing careers, he spent some time without any sign of the disease until Craig was suddenly blind-sided by an experience while driving that left him nearly paralyzed. Without much explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch the continued progression and caused additional unwelcome side-effects.
Craig researched more about stem cell treatments because his doctors could only offer vague uncertainties and although he found Dr. Burt’s clinical trial at Northwestern, after spending a year fighting insurance to pursue HSCT, Craig learned his disease had progressed enough to leave him ineligible for the study criteria. Not willing to give up hope, Craig traveled from Chicago to Texas for a presentation about Clinica Ruiz and was sold on the possibilities that HSCT at Clinica Ruiz offered.
Tune in and learn more about Craig’s unique challenges, fundraising efforts, power of patience, tremendous support of family and friends, and will to find his way to HSCT at Clinica Ruiz in Puebla, Mexico.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Meghan Newell Davis AI: Scleroderma HSCT: 1/22/19 Duke University Superpower: Unbreakable
Have you ever watched a doctor google your symptoms to find help? How often do you take the little things in life for granted? As you move through life, do you take caution not to 'poke the bear'?
Celebrating a son just one year younger than her new immune system, Meghan offers our listeners a glimpse into life with a very aggressive form of scleroderma and her experience with HSCT at Duke University. The highly competitive-Ironman-Nutritionist suddenly found her body to be suddenly sore, stiffening and stonelike. As she continued struggling to hide invisible symptoms that were physically shutting down her body, she spent weeks visiting doctors, researching her symptoms, and experimenting with various alternative remedies to find some relief.
Tune in and hear more about the freight train that wrecked Meghan’s capacity to function in everyday life despite not looking sick. Once she was connected with a rheumatologist, Meghan finally had diagnoses of multiple autoimmune diseases and was fast-tracked to HSCT at Duke University. Through HSCT Meghan gained lifelong warrior friends and family, including her doctors, nurses and care team.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Meghan's race to HSCT Meghan_fit4life on Instagram Dr. Twining, Myrtle Beach Dr. Baker Frost, Medical University of South Carolina
Warrior: Jess Faulds AI: Multiple Sclerosis HSCT: July 2019 in Calgary, CA Superpower: Sensation and mental strength
How do you react when people stare at you? At what age did you feel confident about managing your options with autoimmune disease? Where do you find faith in humanity?
Being diagnosed with MS at 15 years young certainly wasn’t a walk in the park for Jess, but it motivated her to keep active and persistent with staying informed about her options. As someone raised to value movement and nutrition, Jess was sure to incorporate these cornerstones throughout her experience with HSCT.
Tune in and learn more about her routines that promoted a quick rebound from HSCT and the holistic approach to HSCT care and treatment at the clinics in Canada in Calgary and Ottawa.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: Wrap Me Cool wraps MS Society of Canada Jess Faulds on Instagram: alltherightbites
Warrior: Ali Roberts AI: Multiple Sclerosis
Do you believe in the power of self-talk? That the words you say to yourself become the narrative that you fulfill? Where do you find yourself bringing attention?
A brand new season brings another conversation with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, stress, shingles, mindset, wellness, and personal challenges to continue promoting wellness, healing and longevity. Tune in and learn how Ali navigated wellness through the flu and shingles at two years post HSCT, then take away some valuable insights about life that she shares from her coaching perspective.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.
Warrior: Tammy Kazen-Richert AI: Primary Progressive MS HSCT: 2013, AA Maximov Hospital, Moscow Russia Superpower: Incredible hulk-type shifts between calm intention and strength to power through
How intentional are you about making memories? Which side of the coin are you on? Who are the people in life that you can count on to run with you?
After she spent years managing another autoimmune issue, Tammy found HSCT in her research to learn more when she was diagnosed with primary progressive multiple sclerosis. After being denied elsewhere for HSCT due to the PPMS diagnosis, she found that Russia offered a path to HSCT that Tammy chose to run.
Finding a new sense of community among fellow HSCT Warriors has been an uncomparable support for Tammy as she realized that even after a successful transplant, she relapsed after three years post-HSCT and is considered a non-responder. Tune in and be inspired by the brave vulnerability that Tammy shares in her perspective ‘on the flip side of the coin.’
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: The MS Gym Podcast BrookeSlick.com
Warrior: Allison Carr AI: Multiple Sclerosis HSCT: 2014/15, Northwestern Memorial, Chicago IL Superpower: Survival
To what extent do your doctors have your best interest in mind? Does the medical community you depend on even have accurate information about HSCT?
After suffering symptoms without a diagnosis for twenty years, Allison felt completely ignored by her medical community. As a busy mom in a busy career with a busy life, Allison didn’t find much time for her diagnosis of multiple sclerosis, let alone the frightening side effects of pharmaceuticals. Despite the opinions of multiple doctors, when family friends connected her to the possibility of HSCT in a clinical trial, she did her research and pursued HSCT without hesitation.
Tune in to hear the lessons learned as Allison survived a see-saw insurance battle, challenges to her marriage, and what happened when Allison realized that the little she knew about HSCT was more than what her doctors knew or willing to learn. In listening to Allison’s journey, we hope you’ll be inspired to become your own self-advocate and join her in efforts to spread hope and awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. ________________________________________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Keri Huff AI: Tumefactive multiple sclerosis HSCT: July/August, 2010 Superpower: Self-advocacy
When you try to advocate for your health and doctors turn you away, how do you persist? Have you ever reflected on how much time you have? Where do you find beauty each day?
At just 28 years old, Keri started experiencing odd symptoms that countless doctors ignored and dismissed. As she persisted through debilitating pain and extreme fevers, an MRI finally evidenced several masses on her brain. After persisting through additional testing and a ten hour brain surgery, she learned she was pregnant but did not walk away with a diagnosis.
When her masses eventually returned, she continued fighting for answers and connected with Dr. Burt at Northwestern. Sharing her remarkable journey battling multiple autoimmune diseases, be inspired to learn how Keri fought for ten years struggling to find answers and relief from her pain as a one in 20,000,000 statistic, only to face death with the possibility of HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
_________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Ali Strong AI: MS HSCT: 11/6/17 Superpower: Gratitude
Where do you find yourself bringing attention in life? Are you able to find goodness with your current state of being? What have been your most important lessons in life?
Embrace a shift from the typical podcast interview and listen in on Jen’s conversation to check in with Ali Strong on her HSCT journey, and share more about the new nonprofit, HSCT Warriors, Inc. for which Ali serves on the Advisory Board. Tune in and be inspired to integrate strategies that calm the mind and nerves, and be encouraged to find ways to shift the sense of control, or make time in a busy day to nourish yourself.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
_________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Dave Carey Snowflake: Multiple Sclerosis HSCT: 09/11/17 Superpower: New perspective
What is your potential for recovery? Do you have strategies to support your self in recovery? What mindset keeps you engaged? Join us in this last episode of Season 2 and catch up with Dave, learn strategies for recovery, and hear exciting updates!
As his positive outlook on HSCT has carried forward to influence his perspective on life, Dave continues to experiment on how his post-HSCT body will react to the challenges of moving to a different climate, raising a toddler, and changing jobs. Tune in to learn more about the strategies that he incorporates to make time to intentionally support his progress in recovery and wellness.
As Season 2 of the podcast closes with this episode, be sure to listen for exciting new updates about the launch of HSCT Warriors, Incorporated - a nonprofit organization founded by HSCT Warriors to promote awareness of HSCT as a treatment option for autoimmune diseases through education, outreach, advocacy, and personal connections.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday to revisit an episode highlighting a HSCT Warrior from the first season. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: HSCT Warriors, Inc.
Warrior: Bethany Snowflake: Multiple Sclerosis HSCT: 03/08/05 Superpower: Heightened awareness
When you need a different course of action, how long will you bide your time? How confident are you among judgement, shock and awe? What will be your mindset at rock bottom?
Having so many family members plagued with autoimmune disease, Bethany had just run out of options to treat her MS when her mom happened to watch an interview with Dr. Burt. With a ‘must do’ attitude, Bethany confronted HSCT and the public eye with brave resolve. Proclaiming it to be “literally the best thing that ever happened in my life,” you’ll likely be inspired to shed any fears about HSCT when you hear more of Bethany’s journey.
Tune in to hear more about the reciprocity of community, how Bethany continues to promote HSCT and coach others on their own journeys, as well as insights on why HSCT isn’t an option offered by more doctors.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Other HSCT veterans Facebook groups
Warrior: Eileen Snowflake: Multiple Sclerosis HSCT: 01/05/17 Superpower: Knowing you have the rest of your life to look forward to
How much fear do you have when facing uncertainty? How do you adjust when riding a roller coaster? What does normal even feel like?
Despite years of debilitating fatigue and cycling through nine different disease modifying therapies, Eileen had a suspicion that someday, stem cells would help alleviate her pain. After researching the possibility of stem cells on her own, she found immediate support from her neurologist to pursue HSCT at Northwestern in Chicago.
Tune in to hear more about her experience of living with MS for twenty years, changes experienced post-HSCT, and learn more about the recovery roller coaster that has been life changing for Eileen.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Yogaglo Myofascial release
Snowflake: Multiple Sclerosis HSCT: May, 2013 in Moscow, Russia Superpower: Patience and surrender
How do you navigate your diagnosis? Would you describe your perspective as positive or negative? How do you normalize your experience with disease?
After years of experiencing symptoms, Brooke was diagnosed with RRMS in 2006 and cycled through various disease modifying therapies, participated in a clinical trial, and sought alternatives to avoid the risk of developing PML. Despite working full time and distracting herself from the avalanche of symptoms, Brooke found herself transitioning into Secondary Progressive Multiple Sclerosis.
Inspired by the first American “ninja warrior” to receive HSCT in Moscow who blogged every detail about her experience, tune in to learn more about how Brooke focused her attention and perspective on the gifts and possibilities of HSCT. Brooke’s realistic perspective helped her embrace a positive approach and tackle the treatment that worked for her.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Brooke's blog: www.msslick.com Brooke's book website: www.brookeslick.com MS Gym Yoga Dr. Fedorenko at Aa Maximov Hospital, Moscow Russia
Warrior: Leta AI: Secondary Progressive Multiple Sclerosis HSCT: 07-08/18 Superpower: Support from husband and friends
How affiliated are you with your autoimmune disease? How certain are you that HSCT might work for SPMS? How connected are you with your community?
After living with MS for nearly 40 years, when Leta first heard of HSCT while watching the BBC on vacation, she researched it and considered the chance that HSCT could possibly halt her progression. Rather than wait for the disease to get any worse, she decided to pursue the quickest possible course to treatment.
Tune in to learn more about the fabulous care, comfort, and personalized service, and absolve any concerns in hearing more details of the “well-oiled machine” that is HSCT at Clinica Ruiz. Be inspired to treat your diagnosis as an interloper and “dwell on the positive”
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: LetaKrieger.blog MS Gym Clinica Ruiz, Puebla Any List app
Snowflake: Multiple Sclerosis and Lyme Disease HSCT: 2019 Superpower: knowing her body
How does one come to terms with the brutality of multiple sclerosis? How many disease modifying drugs have caused you significant complications? Do you know what it feels like to live a life without a chronic disease?
After seeing too many doctors that wouldn’t listen, receiving a diagnosis at 13 years young, and spending eleven years trying nearly every disease modifying treatment available, Marlo developed inflammation everywhere in her body that led to countless additional potential diagnoses. Having very few memories of her childhood or of positive experiences with doctors, Marlo has persevered with an admirable, courageous, and brilliant sense of hope for the future.
Tune in to hear more about Marlo’s journey with multiple sclerosis and how she is preparing her mind and body to become the first MS patient treated with HSCT according to the BEAM protocol (pending review) at the Dana-Farber Cancer Institute in Boston, Massachusetts.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes, Stitcher, or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
*So much has changed since this episode first aired and we can't wait to catch up with Marlo for an update in Season 4 next spring. In the meantime, find inspiration for resilience and new layers of gratitude with Marlo's courageous journey to HSCT.
Resources noted: Dana-Farber Cancer Institute in Boston, Massachusetts
How thick is the fog on your brain? How clearly are you able to think and plan? When gearing up for a significant medical procedure, how well do you prepare for recovery?
After years of experiencing symptoms without answers until finally receiving a diagnosis of multiple sclerosis in 2016, Bonnie experienced heart complications with her first line of treatment that were exacerbated after abruptly stopping her medication. After finding HSCT as an option, she knew she would need to move quickly in hopes to halt her relapses.
Tune in to hear more about Bonnie’s journey to Clinica Ruiz for HSCT, and the affirmation that mental wellness is just as important - if not more important - than physical wellness. Join the team of supporters that helped her create connections with a community of support close to home, as well as internationally.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes, Stitcher, or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Clinica Ruiz, Puebla Aa Maximov Hospital, Moscow Russia Essential oils Healthy diet
Snowflake: MS Caregiver and HSCT Advocate HSCT: March 18, 2018 Superpower: Knowledge we could not do it alone
How do you shift focus from self to other when faced with taking on the role of caregiver? When you ask your neurologist about HSCT as an option for treatment, what is their reaction? Do you have what it takes to construct space for success?
Meet Jay, a proactive planner who made a conscious decision to move past his own emotions to focus on helping his wife navigate her diagnosis of multiple sclerosis and research a best course of action. After learning more about multiple sclerosis, the course of progression, side effects of DMTs, and the scary uncertainties that come with multiple sclerosis, he pushed his wife to understand more about HSCT.
Tune in to hear more about how quickly they moved to pursue HSCT, their experience with Clinica Ruiz in Mexico, strategies for caregiving from abroad, and how Jay was able to create space for his wife and their three children to make their way along the journey of HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and master the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted:
HSCT.blog Clinica Ruiz, Puebla, Mexico Aa Maximov Hospital, Moscow Russia “So they say” manuscript/documentary
Warrior: Barry Goudy AI: Relapsing Remitting Multiple Sclerosis HSCT: August, 2003 at Northwestern in Chicago Superpower: Belief
How do you place a value on health? When it comes to solutions for your experience with disease, how do you determine whether a treatment is good enough? How far are you willing to go with research?
Despite the devastation after initially failing requirements for the clinical trial protocol, Barry remained persistent to receive HSCT. Once he was accepted for a new study protocol, Barry geared up for halting the progression and enjoyed such a great experience that he has become an ongoing champion for HSCT.
Tune in and hear more about how he tried his best to broadcast the hope and opportunity of HSCT with others, and even testified in front of the United States Congress. This final episode of Season 3 also offers insight to the latest at Northwestern and updates about the signature “Talk to a Warrior” program of the HSCT Warriors, Inc. nonprofit.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Denise Bishop AI: Stiff Person Syndrome HSCT: 9/12/17, Chicago Superpower: increased empathy
How often do you listen to the voice in your head? How much can you afford to endure? What are your strategies to sort through all that needs attention?
Join us to check in with Denise following her two-year check up post-HSCT in Chicago. Learn more about the unexpected twists and turns along her ongoing rollercoaster, and how Denise faced the fluctuations including another autoimmune diagnosis, a traumatic fall, and tragic loss of her grandson.
Despite all the setbacks she has faced, Denise holds firm to a positive attitude and resilient mindset that is inspiring for any warrior. Tune in, find connection, and share in the sense of community.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Ahna Crum AI: Multiple Sclerosis HSCT: April, 2016 in Moscow Russia Superpower: Shapeshifting
What motivates you to find curiosity in life? Have you ever been let down by a one-size-fits-all approach? How equipped are you to adapt?
After suffering significant relapses of her MS from an early age, Ahna found HSCT in her late twenties through research trying to avoid moving into an assisted living facility. With great determination and a positive mindset, Ahna found Moscow to be a welcoming, supportive place.
As someone who leaped into HSCT without any doubts, Ahna found the recovery rollercoaster to be quite the challenge. Tune in to find out more about the post-transplant complications that Ahna faced, how she was able to find her own solutions to heal her body, and how she found her passion to become a partner for HSCT warriors along their journeys.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Restorative Nutrition by Ahna Crum What the Heck Should I eat? by Mark Hyman Psychobiotic Revolution: Mood, Food, and the New Science of the Gut-Brain Connection by Scott C. Anderson MS Gym Podcast
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Are you able to make time for yourself when caring for others? When faced with the whirlwind of life, what do you focus on? How does resiliency inform your outlook?
When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT.
Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
_________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Katie Hominsky AI: MS HSCT: 4/15/19, Chicago Superpower: Confidence
Who has your back when things get tough? When facing struggles in life, where do you seek support? How do you find hope and understanding?
Tune in for this post-HSCT update from Katie, our first hopeful interviewed about her Hope Journey to HSCT and hear more about the ups and downs of her recovery rollercoaster at nearly six months post-transplant. In addition to simply catching up, Katie offers important updates on her fundraising initiatives and support strategies, and shares more about her ongoing Hope Journey.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
_________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Tracey Rossi AI: Multiple Sclerosis HSCT: August 2018 Superpower: Motivation
Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down?
As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Paul Wheeler AI: Secondary Progressive Multiple Sclerosis HSCT: April 10, 2017 Superpower: Dancing
Have you experienced the compassion of humanity? Is your approach to life with disease more of the “cup half empty” or “half full” mindset? Just how full is your cup?
As someone who prefers “research to the nth degree” about medical decisions, Paul weighed the odds of HSCT and determined them better than the 100% chance his disease would progress. Thanks to HSCT, Paul has not only found clarity of mind without the burden of “cog fog” he recognizes that other unexpected improvements he has been so grateful for are not guaranteed.
Tune in to learn more about how Paul rallied the support of his family and community to help raise money in order to get from the UK to Mexico, including a “really weird” journey made of “a marathon a day” spanning 250 miles in his wheelchair. Enjoy this inspiring story of energetic joy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Jarrod Schlipf AI: Multiple Sclerosis HSCT: November 2014 Superpower: Patience
How much effort/time/money has been spent battling autoimmune disease? What is your contribution to the outcomes that you are seeking? How committed are you to making time to build habits that nourish your mind, body and soul?
Tracing his 17 year experience with MS to an auto accident that injured his neck, Jarrod continues to find improvements post-HSCT through reducing a majority of his stress, finding the importance of sleeping and rest, and committing to movement and exercise.
Jarrod’s message that “You get out of HSCT… what you put into HSCT” inspires shifts in thinking and movement of both the mind and body. Recognizing the challenges that he might still face through ongoing recovery, by embracing a positive mindset and gratitude Jarrod is able to find patience and space to focus on getting better and living his second chance at life.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Resources: MS Gym Jarrod's HSCT Journey FB group
Warrior: Tammy Kazen-Richert AI: Primary Progressive MS HSCT: 2013, AA Maximov Hospital, Moscow Russia Superpower: Incredible hulk-type shifts between calm intention and strength to power through
How intentional are you about making memories? Which side of the coin are you on? Who are the people in life that you can count on as running partners?
After she spent years managing another autoimmune issue, Tammy found HSCT in her initial research to learn more when she was initially diagnosed with primary progressive multiple sclerosis. After being denied elsewhere for HSCT due to the PPMS diagnosis, she found that Russia offered a path to HSCT that Tammy chose to run.
Finding a new sense of community among fellow HSCT Warriors has been an uncomparable support for Tammy as she realized that even after a successful transplant, she relapsed after three years post-HSCT and is considered a non-responder. Tune in and be inspired by the brave vulnerability that Tammy shares in her perspective ‘on the flip side of the coin.’
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Allison Carr AI: MS HSCT: 2014/15, Northwestern Memorial, Chicago IL Superpower: Survival
To what extent do doctors have your best interest in mind? Does the medical community you depend on have accurate information about HSCT?
After suffering symptoms without a diagnosis for twenty years, Allison felt completely ignored by her medical community. As a busy mom in a busy career with a busy life, Allison didn’t find much time for her diagnosis of multiple sclerosis, let alone the frightening side effects of pharmaceuticals. Despite the opinions of multiple doctors, when family friends connected her to the possibility of HSCT in a clinical trial, she did her research and pursued HSCT without hesitation.
Tune in to hear the lessons learned as Allison survived a see-saw insurance battle, challenges to her marriage, and what happened when Allison realized that the little she knew about HSCT was more than what her doctors knew or willing to learn. In listening to Allison’s journey, we hope you’ll be inspired to become your own self-advocate and join her in efforts to spread hope and awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Warrior: Keri Huff AI: Tumefactive multiple sclerosis HSCT: 2010
When you try to advocate for your health and doctors turn you away, how do you persist? Have you ever reflected on how much time you have? Where do you find beauty each day?
At just 28 years old, Keri started experiencing odd symptoms that countless doctors ignored and dismissed. As she persisted through debilitating pain and extreme fevers, an MRI finally evidenced several masses on her brain. After persisting through additional testing and a ten hour brain surgery, she learned she was pregnant but did not walk away with a diagnosis.
When her masses eventually returned, she continued fighting for answers and connected with Dr. Burt at Northwestern. Sharing her remarkable journey battling multiple autoimmune diseases, be inspired to learn how Keri fought for ten years struggling to find answers and relief from her pain as a one in 20,000,000 statistic, only to face death with the possibility of HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
_________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Warrior: Ali Strong AI: MS HSCT: 11/6/17 Superpower: Gratitude
Where do you find yourself bringing attention in life? Are you able to find goodness with your current state of being? What have been your most important lessons in life?
Embrace a shift from the typical podcast interview and listen in on Jen’s conversation to check in with Ali Strong on her HSCT journey, and share more about the new nonprofit, HSCT Warriors, Inc. for which Ali serves on the Advisory Board. Tune in and be inspired to integrate strategies that calm the mind and nerves, and be encouraged to find ways to shift the sense of control, or make time in a busy day to nourish yourself.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
It has been great to connect with Warriors worldwide so reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways - including volunteering or monetarily - we’d love to hear from you. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________
Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.
Snowflake: AIMS Charity, UK HSCT: MS Caregiver, Alison Superpower: Dedication
Have you considered the possibilities of traveling abroad to pursue HSCT to halt your autoimmune disease? Are you striving to overcome obstacles like funding or researching HSCT? How do you turn a challenge into opportunity for others?
Meet Alison, a caregiver for her warrior husband who was diagnosed with multiple sclerosis in 2010 and experienced significant declines in a short time. Once they determined HSCT would be the best avenue for treatment, they struggled to be accepted to their local clinic in the United Kingdom. After fundraising to pursue HSCT at Clinica Ruiz in Puebla Mexico, they were finally accepted for treatment in the UK and allocated the dollars already raised to begin AIMS; the world’s first charity to support individuals in their pursuit of HSCT.
Tune in to learn more about how Alison came to co-found AIMS, the world’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: AIMS Charity Symptom Checker Clinica Ruiz, Puebla, Mexico Aa Maximov Hospital, Moscow Russia
Warrior: Katie Snowflake: RRMS HSCT: Chicago, scheduled in March 2019 Superpower: walk with God
Where do you find confidence to move forward? How do you take the reins and find the right mindset? Who do you consider to be family?
Join us along Katie’s Hope Journey and learn from this interview with our first HSCT Hopeful. After spending 9 years battling multiple sclerosis, Katie found the mindset and the communal support to tackle HSCT head on. Despite her roller coaster of seeking insurance approval, the denial that led to fundraising and efforts of advocacy, Katie is now scheduled for pretesting and if all goes well, to undergo HSCT in March, 2019.
Tune in and learn strategies for fundraising, answers to lingering questions, and how connecting with other HSCT veterans helped Katie build genuine excitement for HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Personal blog: Katie’s Hope Journey to end her MS End my MS blog: by Anna Wise
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTWarriors #HSCTWarriorsPodcast, #warriors, #podcast, #autoimmunedisease, #RRMS, #MS, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers
Warrior: Ali Strong Snowflake: RRMS HSCT: 11/6/17, Northwestern Memorial, Chicago Superpower: Gratitude
Where do you find gratitude in life? Are you just surviving in life, or are you thriving?
Tune in for updates from Ali Strong and find out what our first HSCT Warrior has been up to since her first interview. Find out more about the healing that Ali has experienced, her training and research to grow her #alistrong business, and get inspired to shift from just surviving to thriving.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Warrior: Kevin Snowflake: Multiple Sclerosis HSCT: April 2016, Raffles Medical Center, Singapore Superpower: Novena to St. Jude
When facing the unknown, are you curious about possibilities or do you fear uncertainties? What is the part of your journey that has become too familiar? How can we support each other to mobilize for different outcomes?
If you’ve ever been curious to know more about potential complications or side effects associated with HSCT, meet Kevin, who faced nearly any possible challenge you could possibly face (e.g. failed mobilization, infection in the blood) with HSCT, including travel across the globe to Singapore. Despite facing such significant challenges, tune in to learn more about Kevin’s journey to halt his MS and his continued dedication to recover his physical abilities, and promote HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #MultipleSclerosis, #MSWarrior #HSCTsnowflakes, #HSCTsuperpowers
Resources:
Raffles Medical Center, Singapore: rafflesmedicalgroup.com Ohio Facebook group: facebook.com/groups/OhioHSCTgroup/ Zen Jen’s blog: Haltmyms.com WCPO Cincinnati ABC affiliate: wcpo.com
Learn more about the journey of our very own “Zen” Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview, enjoy this conversation from the lens of someone curious to know more about HSCT, and in celebration of Jen’s one-year HSCT birthday.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #MultipleSclerosis, #MSWarrior #HSCTsnowflakes, #HSCTsuperpowers
Resources: haltmyms.com hsctwarriorspodcast.com HSCT at Hoxworth Blood Center, University of Cincinnati HSCT at Clinica Ruiz, Puebla Mexico
Warrior: Cecilia Snowflake: RRMS HSCT: July 11, 2018, Northwestern Memorial Hospital Superpower: Connections
How positive is your outlook? How empowered do you feel by your faith and innate resilience? When life seems scattered like a puzzle, how do your pieces fit together?
Tune in to learn more about how Cecilia embraces a positive mindset, regular mantras, and her lens of love to face any challenge that presents itself. Within the first six months post-HSCT, Cecilia has found strength in physical therapy, resilience in connections and sharing her experiences, and even found the balance to get back to work part-time.
Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Resources: Affirmations by Louise Hay
After hearing a “no” from her first attempt at HSCT, Anna remained open to try anything (including experimenting with mesenchymal stem cell therapy) to cure her MS. She found herself on Medicare and full-time disability for two years at the end of her late-thirties, so after failing four disease-modifying therapies (DMT) and facing the side-effects of yet another DMT, Anna chose to jump at the chance to revisit her application at Northwestern Memorial.
Tune in to hear more about Anna’s journey with Multiple Sclerosis and the effort she made to prevent her disease from progressing; the “rollercoaster” peaks and valleys of post-HSCT recovery; strategies to battle the chemotherapy-related fatigue, regain confidence, and embrace energy from physical exercise in simple environments; and pursue the best life possible.
Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers
Resources: Jesus Calling: Everyday Devotions by Sarah Young Anna’s blog: https://endmyMS.com
Warrior: Karin Snowflake: Systemic Lupus HSCT: December 10, 2015, Northwestern Memorial Superpower: Empathy
Do you tend to put yourself last on your to-do list? Have you ever been at the point in your life when you realize, “This is for the birds!” or feel ready to get on with it [life] already?
Karin’s experience with Systemic Lupus left her bandaged and barely recognizable. Failed medication after another, she realized that her autoimmune disease was “for the birds.” Despite the fear of being away from her busy life for too long, Karin found herself ready for HSCT and encourages listeners to “take care of number one first!”
Tune in to learn more about how Karin harnessed positive energy during HSCT and shifted to a new normal of patience, appreciation for the things she used to take for granted, and found strength to get back to work within just 2 months post-HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #SystemicLupus, #HSCTsnowflakes, #HSCTsuperpowers
As a young warrior with brilliant energy, Julie shines her light on the importance of managing stress in order to negotiate the realities of unpredictability. She very quickly realized the reality that as a progressive disease, MS created daily fear that “the next day could have been the day when I woke up and couldn’t walk again.” Within two short years of diagnosis in 2016, Julie felt completely defeated by MS until she embraced hope as a mantra to navigate life and hasn’t let it go throughout her HSCT journey. Tune in to learn more about Julie’s shifting perspectives and find wisdom that might take others a lifetime to learn.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Blindsided, Richard Cohen Chasing Hope, Richard Cohen Julie’s blog: MakingSenseofMS.com FB group: We’re F’in MS Warriors
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers
Warrior: Dave Snowflake: Multiple Sclerosis HSCT: 09/11/17 Superpower: Perspective
What is your potential for recovery? Do you have strategies to support your self in recovery? What mindset keeps you engaged? Join us in this last episode of Season 2 and catch up with Dave, learn strategies for recovery, and hear exciting updates!
As his positive outlook on HSCT has carried forward to influence his perspective on life, Dave continues to experiment on how his post-HSCT body will react to the challenges of moving to a different climate, raising a toddler, and changing jobs. Tune in to learn more about the strategies that he incorporates to make time to intentionally support his progress in recovery and wellness.
As Season 2 of the podcast closes with this episode, be sure to listen for exciting new updates about the launch of HSCT Warriors, Incorporated - a nonprofit organization founded by HSCT Warriors to promote awareness of HSCT as a treatment option for autoimmune diseases through education, outreach, advocacy, and personal connections.
e sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: HSCT Warriors, Incorporated
When you need a different course of action, how long will you bide your time? How confident are you among judgement, shock and awe? What will be your mindset at rock bottom?
Having so many family members plagued with autoimmune disease, Bethany had just run out of options to treat her MS when her mom happened to watch an interview with Dr. Burt. With a ‘must do’ attitude, Bethany confronted HSCT and the public eye with brave resolve. Proclaiming it to be “literally the best thing that ever happened in my life,” you’ll likely be inspired to shed any fears about HSCT when you hear more of Bethany’s journey.
Tune in to hear more about the reciprocity of community, how Bethany continues to promote HSCT and coach others on their own journeys, as well as insights on why HSCT isn’t an option offered by more doctors.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Other HSCT veterans Facebook groups
Snowflake: Multiple Sclerosis HSCT: 07-08/18/16 Superpower: Knowing you have the rest of your life to look forward to
What does normal feel like? How much patience do you have when facing another diagnosis? How do you adjust on a roller coaster?
After suffering years of misdiagnoses despite pain and debilitating fatigue, Eileen had a suspicion that someday, stem cells would help alleviate her pain. Tune in to hear more about her experience of living with MS for twenty years and learn more about HSCT recovery and all the symptoms that have disappeared.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Yogaglo Myofascial release
Snowflake: Multiple Sclerosis HSCT: May, 2013 in Moscow, Russia Superpower: Patience and surrender
How do you navigate your diagnosis? Would you describe your perspective as positive or negative? How do you normalize your disease?
After years of experiencing symptoms, Brooke was diagnosed with RRMS in 2006 and cycled through various disease modifying therapies, participated in a clinical trial, and sought alternatives to avoid the risk of developing PML. Despite working full time and distracting herself from the avalanche of symptoms, Brooke found herself transitioning into Secondary Progressive Multiple Sclerosis.
Inspired by the first American “ninja warrior” to receive HSCT in Moscow who blogged every detail about her experience, tune in to learn more about how Brooke focused her attention and perspective on the gifts and possibilities of HSCT. Brooke’s realistic perspective helped her embrace a positive approach and tackle the treatment that worked for her.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Brooke's blog: www.msslick.com Brooke's book website: www.brookeslick.com MS Gym Yoga Dr. Fedorenko at Aa Maximov Hospital, Moscow Russia
Snowflake: Secondary Progressive Multiple Sclerosis HSCT: 07-08/18 Superpower: Support from husband and friends
How affiliated are you with your autoimmune disease? How connected are you with your community?
After living with MS for nearly 40 years, when Leta first heard of HSCT while watching the BBC on vacation, she researched it and considered the chance that HSCT could possibly halt her progression. Rather than take a chance on letting her disease run her life, she decided to pursue the quickest course to treatment possible.
Tune in to learn more about the fabulous care, comfort, and personalized service, and absolve any concerns in hearing more details of the “well-oiled machine” that is HSCT at Clinica Ruiz. Be inspired to treat your diagnosis as an interloper and “dwell on the positive”
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes, Stitcher, or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: LetaKrieger.blog Clinica Ruiz, Puebla MS Gym Any List app
Snowflake: Multiple Sclerosis and Lyme Disease HSCT: anticipated by June, 2019 Superpower: hope
How does one come to terms with the brutality of multiple sclerosis? How many disease modifying drugs have caused you significant complications? Do you know what it feels like to live a life without a chronic disease?
After seeing too many doctors that wouldn’t listen, receiving a diagnosis at 13 years young, and spending eleven years trying nearly every disease modifying treatment available, Marlo developed inflammation everywhere in her body that led to countless additional potential diagnoses. Having very few memories of her childhood or of positive experiences with doctors, Marlo has persevered with an admirable, courageous, and brilliant sense of hope for the future.
Tune in to hear more about Marlo’s journey with multiple sclerosis and how she is preparing her mind and body to hopefully become the first MS patient treated with HSCT according to the BEAM protocol (pending review)at the Dana-Farber Cancer Institute in Boston, Massachusetts.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes, Stitcher, or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Dana-Farber Cancer Institute in Boston, Massachusetts
Snowflake: Multiple Sclerosis HSCT: 7.10.18 Superpower: divine positivity
How thick is the fog on your brain? How clearly are you able to think and plan? When gearing up for a significant medical procedure, how well do you prepare for recovery?
After years of experiencing symptoms without answers until finally receiving a diagnosis of multiple sclerosis in 2016, Bonnie experienced heart complications with her first line of treatment that were exacerbated after abruptly stopping her medication. After finding HSCT as an option, she knew she would need to move quickly in hopes to halt her relapses.
Tune in to hear more about Bonnie’s journey to Clinica Ruiz for HSCT, and the affirmation that mental wellness is just as important - if not more important - than physical wellness. Join the team of supporters that helped her create connections with a community of support close to home, as well as internationally.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: Clinica Ruiz, Puebla Aa Maximov Hospital, Moscow Russia Essential oils Healthy diet
Snowflake: MS Caregiver HSCT: March 18, 2018 Superpower: “Knowledge we could not do it alone”
How do you shift focus from self to other when faced with taking on the role of caregiver? When you ask your neurologist about HSCT as an option for treatment, what is their reaction? Do you have what it takes to construct space for success?
Meet Jay, a proactive planner who made a conscious decision to move past his own emotions to focus on helping his wife navigate her diagnosis of multiple sclerosis and research a best course of action. After learning more about multiple sclerosis, the course of progression, side effects of DMTs, and the scary uncertainties that come with multiple sclerosis, he pushed his wife to understand more about HSCT.
Tune in to hear more about how quickly they moved to pursue HSCT, their experience with Clinica Ruiz in Mexico, strategies for caregiving from abroad, and how Jay was able to create space for his wife and their three children to make their way along the journey of HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and master the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: HSCT.blog Clinica Ruiz, Puebla, Mexico Aa Maximov Hospital, Moscow Russia “So they say” manuscript
Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy) HSCT: August 14, 2018 Superpower: ability to walk again
Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?
Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.
Tune in to learn more about the back-and-forth Chris experienced along his path to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: GBS/CIDP Foundation: https://www.gbs-cidp.org/
Snowflake: AIMS Charity HSCT: Caregiver Superpower: Dedication
Have you considered the possibilities of traveling abroad to pursue HSCT to halt your autoimmune disease? Are you striving to overcome obstacles like funding or researching HSCT?
Meet Alison, a caregiver for her warrior husband who was diagnosed with multiple sclerosis in 2010 and experienced significant declines in a short time. Once they determined HSCT would be the best avenue for treatment, they struggled to be accepted to their local clinic in the United Kingdom. After fundraising to pursue HSCT at Clinica Ruiz in Puebla Mexico, they were finally accepted for treatment in the UK and allocated the dollars already raised to begin the world’s first charity to support individuals in their pursuit of HSCT.
Tune in to learn more about AIMS, the UK’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources noted: AIMS Charity AIMS Symptom Checker Clinica Ruiz, Puebla, Mexico Aa Maximov Hospital, Moscow Russia
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #warriors, #HSCTWarriors #HSCTWarriorsPodcast #podcast #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers
Snowflake: RRMS HSCT: Chicago, scheduled in March 2019 Superpower: walk with God
Where do you find confidence to move forward? How do you take the reins and find the right mindset? Who do you consider to be family?
Join us along Katie’s Hope Journey and learn from this interview with our first HSCT Hopeful. After spending 9 years battling multiple sclerosis, Katie found the mindset and the communal support to tackle HSCT head on. Despite her roller coaster of seeking insurance approval, the denial that led to fundraising and efforts of advocacy, Katie is now scheduled for pretesting and if all goes well, to undergo HSCT in March, 2019.
Tune in and learn strategies for fundraising, answers to lingering questions, and how connecting with other HSCT veterans helped Katie build genuine excitement for HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Personal blog: Katie’s Hope Journey to end her MS End my MS blog: by Anna Wise
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTWarriors #HSCTWarriorsPodcast, #warriors, #podcast, #autoimmunedisease, #RRMS, #MS, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers
Snowflake: RRMS HSCT: 11/6/17 Superpower: Gratitude
Where do you find gratitude in life? Are you just surviving in life, or are you thriving?
Tune in for updates from AliStrong and find out what our first HSCT Warrior has been up to since her first interview. Find out more about the healing that Ali has experienced, her training and research to grow her #alistrong business, and get inspired to shift from just surviving to thriving.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Warrior: Kevin Snowflake: RRMS HSCT: February 23, 2017, Northwestern Memorial Hospital Superpower: Novena to St. Jude
When facing the unknown, are you curious about possibilities or do you fear uncertainties? What is the part of your journey that has become too familiar? How can we support each other to mobilize for different outcomes?
If you’ve ever been curious to know more about potential complications or side effects associated with HSCT, meet Kevin, who faced nearly any possible challenge you could possibly face (e.g. failed mobilization, infection in the blood) with HSCT, including travel across the globe to Singapore. Despite facing such significant challenges, tune in to learn more about Kevin’s journey to halt his MS and his continued dedication to recover his physical abilities, and promote HSCT.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Resources: Ohio Facebook group: facebook.com/groups/OhioHSCTgroup/ Zen Jen’s blog: Haltmyms.com WCPO Cincinnati ABC affiliate: wcpo.com
Warriors 11: “Zen” Jen & Sara Leah Snowflake: RRMS HSCT: October 18, 2017, Northwestern Memorial Hospital Superpower: Zen
Do you embrace life’s challenges with open arms? One step at a time? As you find your way along your journey, do you pause to reflect in the moment and express gratitude for those who are along with you?
Learn more about the journey of our very own “Zen” Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview protocol, enjoy this conversation from the lens of someone curious to know more about HSCT, and in celebration of Jen’s one-year HSCT birthday.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” and Sara Leah Miller
Resources: haltmyms.com hsctwarriorspodcast.com HSCT at Hoxworth Blood Center, University of Cincinnati HSCT at Clinica Ruiz, Puebla Mexico
Warrior 10: Cecilia Snowflake: RRMS HSCT: February 2018, Northwestern Memorial Hospital Superpower: Connections
How positive is your outlook? How empowered do you feel by your faith and innate resilience? When life seems scattered like a puzzle, how do your pieces fit together?
Tune in to learn more about how Cecilia embraces a positive mindset, regular mantras, and her lens of love to face any challenge that presents itself. Within the first six months post-HSCT, Cecilia has found strength in physical therapy, resilience in connections and sharing her experiences, and even found the balance to get back to work part-time.
Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers
Resources: Affirmations by Louise Hay
Warrior 9: Anna Snowflake: RRMS HSCT: February 23, 2017, Northwestern Memorial Hospital Superpower: Running
How bright is the light you shine on your present situation? What are you committed to, without any doubts or hesitation, to achieve your “next best life”?
After hearing a “no” from her first attempt at HSCT, Anna remained open to try anything (including experimenting with mesenchymal stem cell therapy) to cure her MS. She found herself on Medicare and full-time disability for two years at the end of her late-thirties and after failing four disease-modifying therapies (DMT) and facing the side-effects of yet another DMT, Anna chose to jump at the chance to revisit her application at Northwestern Memorial.
Tune in to hear more about Anna’s journey with Multiple Sclerosis and the effort she made to prevent her disease from progressing; the “rollercoaster” peaks and valleys of post-HSCT recovery; strategies to battle the chemotherapy-related fatigue, regain confidence, and embrace energy from physical exercise in simple environments; and pursue the best life possible, starting with HSCT.
Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers
Resources: Jesus Calling: Everyday Devotions by Sarah Young Anna’s blog: https://endmyMS.com
Have you suddenly found yourself transformed, yet distracted by old habits or routines that don’t align with your transformation? Are you striving to find the mindset for self-care or compassion for yourself and empathy for others? Do you find anxiety when you consider caregiving to support yourself or a loved one through the HSCT journey? Have you found yourself transformed by HSCT, yet not quite sure how to support your continued healing?
Consider this special episode a “check-in” on our progress, awareness of where we’ve been and where we’re heading, reminders to meet ourselves where we are to practice acceptance and empathy, and awaken our capacity to heal at the cellular level…
Warrior 8: Karin Snowflake: Systemic Lupus HSCT: December 10, 2015, Northwestern Memorial Superpower: Empathy
Do you tend to put yourself last on your to-do list? Have you ever been at the point in your life when you realize, “This is for the birds!” or feel ready to get on with it [life] already?
Karin’s experience with Systemic Lupus left her bandaged and barely recognizable. One failed medication after another, she realized that her Lupus was “for the birds.” Despite the fear of being away from her busy life for too long, Karin found herself tired of her disease and ready to move on. Be inspired by Karin's focus and dedication to “take care of number one first!”
Tune in to learn more about how Karin harnessed positive energy during HSCT and shifted to a new normal of patience, appreciation for the things she used to take for granted, and found the strength to get back to work within just 2 months post-transplant.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #SystemicLupus, #HSCTsnowflakes, #HSCTsuperpowers
Warrior: Julie
Snowflake: RRMS HSCT: February 19, 2018, Northwestern Memorial Superpowers: Empathy and ability to “not sweat the small stuff”
Are you a goal-oriented person who likes to create plans and back-up plans to the plans for every aspect of life? Have your plans been significantly detoured by your experience with autoimmune disease?
As a young warrior with brilliant energy, Julie shines her light on the importance of managing stress in order to negotiate the realities of unpredictability. She very quickly realized the reality that as a progressive disease, MS created daily fear that “the next day could have been the day when I woke up and couldn’t walk again.” Within two short years of diagnosis in 2016, Julie felt completely defeated by MS until she embraced hope as a mantra to navigate life and hasn’t let it go throughout her HSCT journey. Tune in to learn more about Julie’s shifting perspectives and find wisdom that might take others a lifetime to learn.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resources: Blindsided, Richard Cohen Chasing Hope, Richard Cohen Julie’s blog: MakingSenseofMS.com FB group: We’re F*%!^’in MS Warriors
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Have you ever learned something that left you at a loss for words? Found yourself tied to the railroad tracks looking for a way to stop the oncoming train?
Meet Ron, a warrior who invested in the “short term pain for long term gain” of HSCT and found courage to face his fears, doubts, and misconceptions in order to commit to Clinica Ruiz in Puebla Mexico. As an American citizen residing in Canada, he unexpectedly found an extended family and friends in Mexico.
Ron leaped into his journey without looking back, continues to grow his family by embracing a positive outlook, and focusing on the small things to appreciate in life. Tune in to hear Ron’s tips and tricks, encouragement to pursue objective research, and strategies to support a healthy outlook in recovery.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers
Resources: Ron’s blog: ronniesmstrek.mozello.com Heavy Metal testing: https://www.doctorsdata.com/urine-toxic-metals/ 1:1 CBD:THC oils
Warrior 5: Denise Snowflake: Stiff Person Syndrome HSCT: 9/12/17, Chicago Superpower: Increased empathy
Have you ever found yourself distracted by concern for the people in your life that are stressed about your condition? Do you question whether the resources you find when researching your condition are of comparable quality to the resources your doctors can access? Have you learned how to embrace the courage to make your own decisions in healthcare?
Be inspired to take charge of your health when you meet Denise, a warrior who tapped into her 35 years of service as a trauma-care nurse when diagnosed with Stiff Person Syndrome. Once she started researching the disease, eventual progression, treatment options (e.g. IVIG, plasmapharesis, valium) and their respective side-effects, she informed her neurologist that HSCT would be the only option forward she found to be acceptable.
Tune in to learn strategies for handling the logistics of HSCT, including the importance of building a strong support team, knowing your limits, and finding a purpose. Denise shares insights that help to promote her mental, emotional, and physical recoveries.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen” Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #StiffPersonSyndrome, #HSCTsnowflakes, #HSCTsuperpowers
When you pause to reflect about what has changed during a year, what do you see or feel? If you take time to recognize your own personal successes, have you ever hesitated to share what you find with others?
Meet Dave, a warrior who tried nearly every treatment available to treat his multiple sclerosis before finally receiving HSCT November 11, 2017 at Northwestern Memorial Hospital. Dave used a cane and experienced regular active relapses before transplant so he was ready for a life-changing event. As he worked to get things in order and prepare for the worst, he ended up surprised when Dr. Burt said to him, “I can help you” without caveat.
Dave approached HSCT with a commitment to “not fight anything” except his eagerness to get back to normal once he returned home. Listen to Dave’s strategies for keeping a positive mindset, accept all aspects of the process, “take a beat” and embrace the emotions including the difficult, stressful, or uncomfortable ones. Dave’s story will inspire you to “like yourself more,” embrace family and friends, develop an affinity for unexpected relationships, and experience life with a newfound perspective.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Resource: Bradberry, T., & Greaves, J. (2009). Emotional Intelligence 2.0. TalentSmart. ISBN-10: 0974320625
Do you know the importance of truly understanding your body? Can you get comfortable with letting go of expectations?
Meet Ellie, a warrior diagnosed with multiple sclerosis who received HSCT at Northwestern Memorial Hospital in June, 2016. Ellie initially found HSCT in 2003 but didn’t find herself ready for the procedure until 2015 after a relapse forced her to stop working.
Determined to “stay the course” and not rush into anything, hear more about the benefits of tuning into and getting to know your body throughout the recovery rollercoaster. Ellie shares some of the strategies she uses to tune in and focus on breathing, healing, and well-being.
Tune in to hear more about Ellie’s journey to embrace uncertainty, learn strategies to support the nervous and autonomic systems, and better get to know your body, nutrition, balance and well-being. Continue following Ellie and her abundance of gratitude on her blog: http://HSCTforMS.com
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Do you find yourself struggling to adapt with shifting realities of autoimmune disease? Are you looking to find peace in your life? Or get inspired by transformational journeys?
Meet Dustin, a warrior diagnosed with multiple sclerosis who received HSCT at Northwestern Memorial Hospital, four years after his initial diagnosis. His abilities were rapidly declining, he relied on a cane to walk, and was eager to find a “cure for MS.”
His resolve helped him let go of the need to be in control and stop trying to plan for future uncertainties. He was able to allow Dr. Burt to “take the reigns,” and completely trusted the nurses and staff throughout the HSCT process. Hopefully Dustin finds continued healing and someday soon he will be able to accomplish all that he feels ready for.
Tune in to hear Dustin’s journey with HSCT, his secrets to staying positive and strategies to cope during the two-week-plus long hospital stay where “you’re never alone, but you’re always lonely.”
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Have you ever found yourself on a road you’ve never been down before? Found strength to navigate a pathway that is far from straightforward? Uncovered faith where you never believed it could exist?
Meet Ali, a warrior diagnosed with multiple sclerosis who “just doesn’t settle well for [being told] ‘there’s nothing left we can do’.” Before she received HSCT at Northwestern Memorial University, her biggest challenges with MS created extreme stomach issues that restricted her diet and for 11 years, she “couldn’t eat a single meal without getting sick.”
Through extensive research, Ali fought her fears of chemotherapy, connected with some beautiful souls, and found tremendous strength to power through an extraordinarily challenging HSCT experience. Her journey helped her shift from a life “which was just surviving” to embrace positivity, “what inspires and lights me on fire” without fear, and her unique law of attraction.
Tune in to hear Ali’s transformation as her story offers “hope to people struggling with autoimmune disease... to know that there’s an option out there... that [is] getting safer and safer all the time.” Ali offers brave inspiration in sharing a piece of the “bunnies and tiaras” warriors’ story, honoring her soul-sisters and the legacy of HSCT advocacy.
Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.
Welcome to the HSCT Warriors Podcast - bringing voice to the journeys of HSCT Warriors worldwide.
HSCT stands for hematopoietic stem cell transplant - a medical procedure inspired by the research of Dr. Richard Burt out of Northwestern University in Chicago, Illinois. Autologous HSCT uses high-dose chemotherapy to target and obliterate the blood cells that carry the messaging of autoimmune disease, and once the diseased cells are “too low to count” the return of a patient’s own stem cells then helps to boost the growth of a brand new immune system.
As an HSCT warrior myself, I started this podcast to portray personal narratives and expand the snapshots from social media - to highlight the snowflakes (individual experiences) and recognize our superpowers - because we are just as unique in our HSCT journey, as we are in our experience with autoimmune disease.
So whether you are - or know someone - who is battling Multiple Sclerosis, Rheumatoid Arthritis, Type II diabetes, Scleroderma, Lupus, or any of the 24 autoimmune diseases that HSCT can halt - or are simply inspired by transformational journeys - you are in the right place.
The interviews you will hear on this podcast are intended to offer insight and create connections, reveal grace and express gratitude, promote wellness and cultivate well-being.
As we continue to grow the HSCT Warrior community, illuminate the invisibilities of autoimmune disease, recognize the possibilities of a future free from disease progression, connect through our shared experiences, and advocate for an inclusive society… we’re glad you’ve joined us.
Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.
Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.