CAH PULSE

CARES Foundation
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  • 科学
  • アップデート：毎月

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*

  1. 6月15日

    Season 3 | Episode 5: Allyson’s Journey: “Different is What Makes You Good”

    In this encouraging episode of CAH Pulse, Dina and Stephanie talk to Allyson who is gracefully navigating life with CAH. Allyson eagerly shares her journey from being diagnosed at birth to becoming an athlete, an aspiring mentor for others in the CAH community and a motivated, thriving young adult. An avid swimmer and rock climber, there’s no mistaking Allyson’s positivity and drive when she lovingly mentions her supportive parents who allowed her to live as a typical child. When she opens up about her surgeries, her seizures, college life and the biggest challenge of all; finding an adult endocrinologist who actually knows what CAH is… it becomes apparent that Allyson finds power in being an open book.    Finally, Allyson doesn’t miss a chance to share her mindset about living with this rare and difficult condition; giving sage advice to parents, kids and young adults so they too can gain the strength to resist limitations and most of all shame. Her inspiring words that being different “is what makes you, good” is also what makes this memorable episode of CAH Pulse so hopeful.

  2. 5月20日

    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.

  3. 4月7日

    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.

  4. 3月14日

    Season 3 | Episode 2: Lupe and Christina: Raising a CAH Superstar

    When Lupe’s daughter Christina was born, everything changed in an instant. After a difficult pregnancy and an unexpected diagnosis of CAH, Lupe found herself navigating a condition she had never heard of. In this episode of CAH Pulse, Stephanie and Dina learn about Lupe’s emotional early days of Christina’s diagnosis, the powerful reassurance from doctors that set the tone for her life, and how her family learned to manage life with CAH. Today, Christina is a thriving, softball-loving three-year-old with a big personality—and even a viral TikTok video! Lupe’s story is about resilience, family, and raising a child who proves that kids with CAH can live full, beautiful lives.

  5. 2月23日

    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"!

  6. 1月30日

    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.

  7. 2025/12/02

    Season 2 l Episode 11: Dimitri: The Long Game of Drug Discovery

    In this episode of CAH Pulse, host Stephanie Erb and CARES Foundation director Dina Matos sit down with distinguished scholar Dr. Dimitri Grigoriadis of Neurocrine Biosciences for a rare behind-the-scenes look at how medications are discovered, tested, and brought to life. From the origins of CRF research to the challenges of treating a rare disease like CAH, Dimitri explains the drug-development journey in an accessible, fascinating way—complete with scientific surprises, first hand patient insights and the grit it takes to spend decades pursuing a single advancement. From basements to breakthroughs and an unwavering commitment to helping patients living with CAH, join Stephanie and Dina as they uncover Dr Dimitri's journey of research, perseverance and success.

  8. 2025/10/17

    Season 2 l Episode 10: Brittany: Demanding Change After a Lack of Answers and Getting Nowhere

    In this uplifting episode, Stephanie and Dina speak to Brittany, an outspoken 29-year-old living with CAH. A self described "open book", Brittany shares her life's journey from her diagnosis as a toddler, thanks to her mother's intuition and advocacy, to her drive to find a cure for CAH.  Along the way Brittany reveals she has suffered from weight gain, severe acne and even a femoral stress fracture. Her path also includes a life changing moment after meeting others for the first time who are also living with CAH, with help from CARES. Brittany's collective experiences have inspired her to make a difference in the CAH community by helping to connect others. She makes clear her inclination that there be more research, more mental health understanding and awareness, to eradicate the use of steroids and to finally find a cure. Oh, and don't forget the donuts...

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番組について

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*

情報

  • クリエイター
    CARES Foundation
  • 配信期間
    23年 - 26年
  • エピソード
    23
  • 制限指定
    不適切な内容を含まない
  • Copyright
    © Copyright 2023 All rights reserved.
  • 番組のWebサイト
    CAH PULSE