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CAH PULSE

Podcast af CARES Foundation

engelsk

Business

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CAH Pulse takes us on a journey to educate and bring attention to the challenges and triumphs of individuals living with Congenital Adrenal Hyperplasia (CAH). Each month patients, family members, medical professionals, researchers and caregivers share their stories, experiences and advice living with this challenging condition. Our hope is to further connect and champion this incredible community. *This podcast was recorded under a SAG-AFTRA Collective Bargaining Agreement*

Alle episoder

22 episoder

episode Season 3 | Episode 4: From Patient to Pioneer: Julia Anthony Always Goes Big cover

Season 3 | Episode 4: From Patient to Pioneer: Julia Anthony Always Goes Big

Born with salt-wasting CAH before newborn screening existed, Julia Anthony spent much of her childhood, high school and even college days in hospitals dealing with adrenal crises; which did not stop her from playing sports or having plenty of fun. However, in hindsight, it did change her in a most positive way. In this inspiring and animated conversation, Dina and Stephanie uncover how Julia’s experiences have shaped her into a humble CAH patient, fierce advocate and ambitious entrepreneur. Julia opens up about the lessons she has learned, what has driven her to start her own company and why community, self-advocacy, and resilience matter so much. Honest, playful and emotional, this episode gives us a powerful reminder that it’s possible to turn challenges into purpose.

20. maj 2026 - 33 min
episode Season 3 | Episode 3: A Mother’s Gut is Never Wrong - Becky’s Unexpected Journey cover

Season 3 | Episode 3: A Mother’s Gut is Never Wrong - Becky’s Unexpected Journey

In this powerful episode of CAH Pulse, Becky, shares her deeply personal journey navigating her newborn daughter’s unexpected CAH diagnosis. What was planned to be a joyful home birth turned into a whirlwind of uncertainty, medical urgency, and a near death experience for her newborn. From frustrating medical guidance and the uncertainty of not knowing the sex of her baby to the emotional highs and lows and finding the right support, Becky’s story highlights the importance of community, and trusting your gut as a mother. Join Stephanie and Dina for this heartfelt conversation which will serve as an inspiring reminder of a mother’s intuition, the importance of finding a center of excellence, and the resilience families ultimately discover when faced with the unexpected.

7. apr. 2026 - 34 min
episode Season 3 I Episode 1: Karter - "You gotta just do it" - Insights Positivity and Advice from a Seventeen-Year-Old Salt Waster cover

Season 3 I Episode 1: Karter - "You gotta just do it" - Insights Positivity and Advice from a Seventeen-Year-Old Salt Waster

In this uplifting episode of CAH Pulse, Stephanie and Dina talk with the unflappable 17-year-old Karter, who shares his experiences as a high school student-athlete living with salt-wasting CAH. Karter’s unique and straightforward approach to managing his CAH as well as his advocacy and action is a perfect antidote to the confusion, stress, and stigma often associated with this condition. He tells us about his younger brother, his mom’s protection and he shares his practical advice for other young CAH adults to "just do it". Together, Dina Stephanie and Karter uncover the importance of connecting with the CAH community as well as the impact and life changing benefits of new treatments. Karter’s positive attitude and insightfulness about managing his condition, preparing for college, and advocating for himself and others will have you cheering "just do it"!

23. feb. 2026 - 35 min
episode Season 2 I Episode 12: Non-Classical CAH - Fertility Treatment and the Importance of Genetic Testing cover

Season 2 I Episode 12: Non-Classical CAH - Fertility Treatment and the Importance of Genetic Testing

In this final episode of Season 2 - Stephanie and Dina are joined by leading CAH experts, Drs. Witchel and Auchus. This episode was made to provide a deeper understanding of the differences between salt-wasting CAH (classical) and non-classical CAH which is often misunderstood, frequently under-diagnosed, and highly individualized.  The experts share their thoughts on if and when treatment makes sense, how this condition is often diagnosed, the risks of early puberty, fertility considerations, and much more! You will learn about the genetics and inheritance of non-classical vs classical and most notably the importance of expert care  given the wide spectrum of variables in non-classic CAH. Enjoy this poignant episode where Stephanie and Dina unlock the mysteries of non-classical CAH.

30. jan. 2026 - 30 min
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