The Zebra Chronicles: Recent Episodes
Kathaleen and Henry Deane
The Zebra Chronicles is a podcast created to shine light on the challenges the chronic illness and rare disease community face on a day to day basis. Hosted by Kathaleen Deane and her husband Henry Deane, the pair share stories of her life with chronic illness and what it is like to be a significant other with a spouse who is chronically ill. The pair also interview others to share their stories about diagnosis, treatment, daily struggles, and more.
On this episode Julia outlines her journey with Type 1 Diabetes. From a scary start to learning how to live a life with a defective pancreas. Julia shares an honest look at her chronic illness and how it effects her every day life.
Use this link for more information on Type 1 Diabetes: https://www.diabetes.org/diabetes/type-1
If you are looking for support, check out Beyond Type 1: https://beyondtype1.org/
If you are looking for affordable insulin, Beyond Type 1 has created a website to help: https://getinsulin.org/ Individuals can also go to the manufacturer of the insulin they take: ie: Lilly or Novo Nordisk or Sanofi or Viatris.
Julia uses an insulin pump made by Tandem. The technology is called Control IQ along with the CGM (continuous glucose monitor) to create an "artificial pancreas"
For more information on this technology, follow these links: https://www.tandemdiabetes.com/landing-pages/x2-pediatric/?utm_source=BeyondType1&utm_medium=dgital_ad&utm_campaign=pediatric&utm_term=ML-1007983_A&utm_content=
and
https://www.dexcom.com/continuous-glucose-monitoring?utm_source=adwords&utm_campaign=b&sfc=701f3000000athzAAA&gclid=CjwKCAjw4qCKBhAVEiwAkTYsPLZmi5-J2ncv0flpYREscgo3NWy5gBpfM150k5AhOR26Cq2TxSMKEBoCIHgQAvD_BwE
If you would like to reach out to Julia, please contact the zebrachronicles via Instagram @ zebra_pod or via email at kathaleen.d@gmail.com
This episode we speak with Elizabeth. She is a photographer that was diagnosed with a rare disease known as Osteonecrosis which is also known as Avascular Necrosis (AVN). Listen to her describe her symptoms, diagnosis, and treatment that have led her where she is today.
Use this link to find Elizabeth, her podcast, blog, and photographs: https://www.gardenramblings.co.uk/
You can find more information on AVN here: https://rarediseases.org/rare-diseases/osteonecrosis/
In this episode, we talk to Sarah. She discusses her symptoms and journey to maintain pain relief of her Rheumatoid Arthritis through alternative medicine. She is a health coach and licensed Doctor of Oriental Medicine. In episode 7, we spoke to her business partner and friend Erica.
Visit this Facebook group more information on her practice with her business partner Sarah: https://www.facebook.com/groups/reachingfullpotentialthroughholistichealing
For more information on Rheumatoid Arthritis visit: https://www.arthritis.org/diseases/rheumatoid-arthritis
This week we speak with Erica. She discusses her life with Fibromyalgia. Her symptoms, diagnosis, and journey towards health coaching and move towards licensure as a Doctor of Oriental Medicine.
Visit this Facebook group more information on her practice with her business partner Sarah: https://www.facebook.com/groups/reachingfullpotentialthroughholistichealing
For more information on Fibromyalgia visit: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia
This episode we speak with Heather. She was diagnosed with PoTS after years of symptoms that were exacerbated after giving birth. She also faced misdiagnosis of Gitelman Syndrome and progressive symptoms relating to HSD, gastroparesis, cyclical vomiting syndrome, chronic idiopathic hives, Raynaud’s, an a yet to be diagnosed autoimmune disease.
For more information on these chronic illnesses, check the links below:
Gitleman Syndrome: https://rarediseases.org/rare-diseases/gitelman-syndrome/
HSD: https://www.ehlers-danlos.com/what-is-hsd/
Cyclical Vomiting Syndrome: https://rarediseases.org/rare-diseases/cyclic-vomiting-syndrome/
PoTS: http://www.dysautonomiainternational.org/page.php?ID=30
Gastroparesis: https://rarediseases.org/rare-diseases/gastroparesis/
Raynaud’s: https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
Chronic Idiopathic Hives: https://www.webmd.com/skin-problems-and-treatments/hives-diagnosis
This week is part 2 of my interview with Ioana. She continues her story discussing her journey to becoming a health coach and we chat about different issues we face in the chronic illness community.
If you want to know more about Ioana, visit her IG page at: https://www.instagram.com/ivintila_/
For more information on dysautonomia, visit: http://www.dysautonomiainternational.org/
This week we have part 1 of my interview with Ioana. She shares her story of symptoms, diagnosis, and treatment of PoTS, SIBO, EDS, and more.
Her story this week will bleed over unto next week where we will continue her journey to where she is now and her move to her career as a health coach for those with PoTS and Long COVID.
If you want to know more about Ioana, visit her IG page at: https://www.instagram.com/ivintila_/
For more information on dysautonomia, visit: http://www.dysautonomiainternational.org/
This episode we talk to Andrew, creator of the GP Pie Face Challenge.
We discuss his journey to diagnosis as a young child, his challenges with treatment, the support of his family, and his success with the gastric stimulator. We also discuss the development of the GP Pie Face Challenge, memorable smashes, and the importance of awareness.
You can find Andrew on Facebook, Instagram, Twitter, and TikTok using this link: https://linktr.ee/gppieface
To support gastroparesis, please consider donating to G-Pact. You can find them using this link: https://linktr.ee/GPACT
You can find more information on gastroparesis symptoms, diagnosis, and treatment using this link: https://www.cedars-sinai.org/health-library/diseases-and-conditions/g/gastroparesis.html
This episode continues the journey through Kathaleen's early diagnoses, discusses the issues that arose from finally entering puberty and eventually arrives at the condition that inspired her to start this podcast. In the Henry's "My Wife is Sick" segment he talks about feeling judged for being the healthy half of the duo.
Information about the D&C procedure mentioned in the podcast can be found here.
This episode focuses on Kathaleen's initial diagnosis of Growth Hormone Deficiency and Secondary Adrenal Insufficiency. Kathaleen explains her diagnosis of a chronic illness in her teen years, discusses her initial testing, and what these changes meant to her at the time. In the second part of the podcast, Henry discusses his role as a spouse of a chronically ill significant other and how isolating it can be.