The Sickle Cell Podcast: Recent Episodes
Sickle Cell 101
Talking about all things sickle cell related, sharing warrior experiences and providing sickle cell related education. Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Join host Maia Garrison as she speaks with passionate advocates shining a light on sickle cell disease. La'Shardae Scott, the 2022 SCAY Advocate of the Year, discusses her non-profit organization that bridges the gap by transitioning pediatric patients to adult sickle cell care. Faith Adjei-Sarpong, the Digital SCAY Advocate of the Year, shares how she inspires warriors through social media to live life fully despite having sickle cell disease. Prepare to be inspired by their dedication to raising awareness and empowering the sickle cell community.
Find:
La'shardae Scott
Faith Adeji- Sarpong
Instagram:
@faiithooo
@lashardae_scott or @scottcenteroh
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Join hosts Cassandra Trimnell and Maia Garrison as they hear from Holly John, Senior Director of Patient Advocacy at Agios Pharmaceuticals, recognized as the SCAY Community Partner of the Year for her groundbreaking work integrating patient voices into drug development and advocacy. Also, meet Ayana Johnson, the SCAY Youth Advocate of the Year, a high schooler who has launched a nonprofit, lobbied for legislation, and engaged with President Biden, inspiring fellow youth warriors. Prepare to be moved by their passion and dedication to revolutionizing sickle cell care.
Find Ayana Johnson
Instagram: _ayana_lee_
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--- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support
Featuring Christina Augustine and Dr. Alexander I. Ngwube, MD, this episode provides an comprehensive exploration on bone marrow transplant (BMT) for sickle cell disease, blending personal experiences with professional expertise.
A huge thank you to Be the Match for Sponsoring this episode. For more information about Be the Match, visit: https://sicklecellconnect.com
Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support
--- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support
For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode. Abi talks with special guests Abisola and Seyi Shof, also known as “the Shofs” on social media, about their involvement in the sickle cell community, their love story with SCT, the challenges they had to face with telling their families, and weighing the options for marriage and children that led them to their IVF journey with PGD testing.
Find Abisola and Seyi Shof on
- Instagram: @theshofs
--- Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
The first of our Hot Topic 🔥 series. Hosts Stephen and Cass have THAT conversation about two individuals wanting to have children but are faced with a chance of having a child with sickle cell disease.
Do you believe people who are "genetically incompatible" (like AS and AS) should have children? Send in your responses to podcast@sc101.org
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Cass chats with the 2021 Sickle Cell Advocates of the Year (SCAY) Award recipients about how they got involved and what they’ve achieved. This episode features:
- Biba Tinga - Sickle Cell Advocate of the Year
- Siliana Coelho - Digital Sickle Cell Community Advocate of the Year
- Sarah Masamba - Sickle Cell Healthcare Profession (HCP) Advocate of the Year
A big thank you to our partner AllStripes!
Visit https://sc101.org/SCAY to connect and learn more about the SCAY Award winners.
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Caregiving for sickle cell is underrated... Celebrating National Family Caregiver's Month, it's just Stephen and Cass this episode talking about what caregiving for sickle cell looks like – even caregiving from abroad. There is mild humor sprinkled in too. 😬
A HUGE THANK YOU TO OUR SPONSOR: Sickle Cell Speaks
SickleCellSpeaks is people sharing their stories and strengths living with sickle cell. #SickleCellSpeaks talks about navigating the situations and feelings people with sickle cell face. Visit sicklecellspeaks.com to learn more.
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Hosts Dr. Stephen Boateng and Cass Trimnell talk to workplace diversity and inclusion expert Tayo Rockson, MBA about discuss tips, accommodations, and how to navigate the workplace when living with sickle cell disease.
Find Tayo Rockson on
- Instagram: https://www.instagram.com/tayorockson
- Website: https://tayorockson.com
- Podcast: https://podcasts.apple.com/us/podcast/as-told-by-nomads/id910739730
A HUGE THANK YOU TO OUR SPONSOR: Hemanext
Hemanext partners with groups like Sickle Cell 101 on resources and tools for sickle cell patients. Safer transfusions, healthier patients, that’s their mission. Visit hemanext.com to learn more about the company.
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Dr. Jonathan Lassiter is a clinical psychologist living with sickle cell disease. Listen to his and guest host Naim Rasul’s gems on managing mental health issues for sickle cell disease.
Personal Website
Talks at the Schomburg
Book: Black LGBT Health in the United States
Twitter: @matjl
Instagram: @jmlassiterphd
Pronouns: he, him, his
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Did you think Renal Medullary Carcinoma (RMC – a kidney cancer) was a sickle cell trait complication? Listen and learn more about this rare, but aggressive kidney cancer and what signs, symptoms, and precautions to take to stay on top of this issue and your kidney health. Featuring RMC expert Dr. Pavlos Msaouel
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Girls chat! In honor of Women's History Month, we're talking about women's reproductive health and advocacy with sickle cell advocate Teonna Woolford, founder of SC-RED.
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An important discussion on the racial disparities individuals living with sickle cell disease face within the U.S. healthcare system. This episode features hematologist-oncologist physician and activist Dr. Ahmar Zaidi.
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Happy holidays! Stephen and Cass have a list of questions to ask each other. Tune in to learn more about their personal lives, philosophies on sickle cell, and their deep dark secrets (haha).
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Girl chat! Fashion model and sickle cell warrior London Knight shares how she juggles being a model, advocate and inspiration to others. 💋💃🏽
You can follow London Knight on Instagram at @LondonKnight_
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Sponsored by bluebird bio– A mother's perspective on raising her son diagnosed with sickle cell SC disease. This episode addresses the blessings and the hardships Brenda Greene has experienced as a caregiver. We also discuss discovering their genotypes, tips for newly diagnosed families, and nonprofit organization The B Strong Group's work with blood donation.
We would like to thank our sponsor bluebird bio. Check out a new website to learn how you can advocate for better sickle cell care. Take some time to check out SparkSickleCellChange.com to learn more and sign up to Be The Spark for Change in Sickle Cell!
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Sickle Cell + Gene Therapy: An Honest and Open Discussion About Gene Therapy
This episode features Aeon Chintersingh, an adult who underwent gene therapy to cure sickle cell disease and Dr. Isaac Odame, a specialist and medical director of Hematology/Oncology at SickKids in Toronto.
We discuss fertility, chemotherapy, genotypes, the word 'cure' and much more.
We would like to thank our sponsor Aruvant Sciences, a company focused on developing gene therapies for rare diseases. Aruvant Science has an ongoing clinical trial in sickle cell that is currently enrolling participants. Please go to momentumtrials.com for more information on the clinical trial.
Aruvant neither owns nor controls this platform and does not have editorial control over content or responsibility for any other information provided.
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Dedicated to all the people living with sickle cell disease (SCD) who wanted to grow up to be a doctor to treat others living with SCD. Halimat Olaniyan is living out this dream. We're chatting about her journey as a second-year med student and as an individual living with sickle cell disease.
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
We're sharing stories, responses and discussing the theme of this year's Sickle Cell Awareness Month, "Sickle Cell Taught Me..."
Current event links:
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Black Blood Matters: https://www.wavy.com/news/health/red-cross-black-blood-matters-for-some-with-sickle-cell-anemia/
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Sickle Cell Patients Should Have Medical Exemption in the UK: https://sicklecellanemianews.com/2020/08/19/uk-nhs-medical-exemption-petition/
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Millions of Americans carry the sickle cell trait, many without knowing it. Could they be at risk for severe Covid-19?: https://www.statnews.com/2020/09/03/millions-carry-sickle-cell-trait-could-they-be-at-risk-for-severe-covid19/
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When Actions Speak Louder Than Words — Racism and Sickle Cell Disease: https://www.nejm.org/doi/full/10.1056/NEJMp2022125
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
A 'Why Sickle Cell' episode featuring Rhiannon and her mother Scherika's inspiring journey to cure Rhiannon's sickle cell disease and lupus. An honest look into what it takes to undergo a bone marrow transplant.
A huge thank you to Be the Match for sponsoring this episode. For more information about Be the Match, visit: https://bethematch.org/sicklecell
Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Adult hematologist Dr. Julie Kanters talks about managing sickle cell pain at home, especially during the COVID-19 pandemic.
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Featuring sickle cell clinical psychologist, Marsha Treadwell, PhD, we're talking about mental health, COVID-19 and tips and tricks to stay level headed and positive during these challenging times.
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Let's get physicals!! We're back with our first episode of 2020, celebrating Black History Month, testing for sickle cell trait and getting physicals... with a side of cheese. 🧀
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Sickle cell disease doesn't stop him. He received his MBA and traveled throughout Asia while doing it.
This 'Why Sickle Cell?' series episode features Ade Adeyokunnu and how he navigates advocacy, higher education and travel.
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This one's for the 10th anniversary of World Sickle Cell Day. 🎉
Learn facts that you can share with your family and friends for World Sickle Cell Day!
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May is Mental Health Awareness Month. This episode features psychologist and epidemiologist Dr. Charles Jonassaint, PhD, MHS and delves into mental health in sickle cell disease.
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What do you get when you're an individual living with sickle cell disease and a physician? You get Dr. Oladipo Cole.
This 'Why Sickle Cell?' series episode features Dr. Cole and how he navigates living with sickle cell disease and being a physician.
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They say sickle cell chooses you, so we ask experts, patients and everyone in between why they're invested in sickle cell, while learning about their experience with sickle cell.
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Talking with guest Dr. Q all about blood transfusions - types, benefits and risks, hydroxyurea, alternatives and more. Definitely for the nerds! 🤓
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Talking about the mistreatment we endure in healthcare settings.
Articles:
• ‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside - https://www.statnews.com/2017/09/18/sickle-cell-pain-treatment/
• Sickle cell patients face a ‘fight for everything’ — even attention - https://usat.ly/2EGKz8J
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Happy Sickle Cell Awareness Month!
Stephen nerds out on everything sickle cell trait, hence the length of the episode.
This episode delivers our usual cheese, so enjoy! :)
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Celebrating sickle cell greats like King Tut, Walter Clement Noel and more.
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A sickle cell warrior and a pharmacist with sickle cell trait chatting about the current state of sickle cell and looking to the future. Also featuring a Warrior Story about overcoming priapism. Bear with our cheesiness, it our first episode!
Stephen's WSCD piece: https://bit.ly/2I0eie3
Friends? Sickle Cell 101's Social Media -Facebook: Sickle Cell 101 -Instagram: @sicklecell101 -Twitter: @sicklecell101
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Sickle Cell 101's educational podcast with sickle cell related topics.
If you have any sickle cell related questions for the show, please send them in to ask@sc101.org
Support this podcast: https://anchor.fm/thesicklecellpodcast/support