CAH PULSE

CARES Foundation
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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*

  1. ٧ أبريل

    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.

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  2. ١٤ مارس

    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.

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  3. ٢٣ فبراير

    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"!

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  4. ٣٠ يناير

    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.

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  5. ٠٢‏/١٢‏/٢٠٢٥

    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.

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  6. ١٧‏/١٠‏/٢٠٢٥

    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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  7. ٠٣‏/٠٩‏/٢٠٢٥

    Season 2 | Episode 9: Kristina: "We're going to call your baby...'Baby'" - Removing the Stigma from CAH

    In this touching episode, Stephanie and Dina speak to Kristina, a young mom to 2 little girls who's younger daughter lives with salt wasting CAH. Kristina recalls her journey from giving birth to Franny through her now fifteen months of life, including feeding routines, hospital visits, medication and explaining her condition to family, day care and friends. Unsurprisingly, the day Franny was born, Kristina was told "something is wrong with your baby, your baby has ambiguous genitalia".  Grappling with not knowing what that could have meant, Kristina simply replied, "is my baby going be alright?" and "is she going to live?" Due to the all too familiar lack of knowledge and professionalism on the hospital's behalf, Kristina was left alone, terrified, contemplating her new life with a baby she had yet to meet.  Kristina's story also includes the hospital's suggestion to not add "female" to Franny's birth certificate, a NICU doctor who would only identify Franny as the "baby" and Kristina's subsequent overwhelming feeling of disappointment and fright for what the future held for her family...especially her brand new baby girl Franny.   With Stephanie's and Dina's wisdom and experience, the three women embark on a voyage to squash the stigma attached to CAH with the goal to give Franny and other children and adults living with CAH a healthy life free of stress, judgement and grief.

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  8. ٢٥‏/٠٦‏/٢٠٢٥

    Season 2 | Episode 8: Lesley and Louise: No Shame! Putting an End to the Secrecy of CAH

    In this gripping episode Dina and Stephanie tackle a most important and controversial topic, putting an end to the dangerous stigma which far too many children (both boys and girls), parents and adults living with CAH encounter, causing adverse effects on their lives.  This episode is a crusade to make a difference to the lives of so many who live in darkness and risk thanks to the dangerous and unnecessary shame that often exists with CAH.    Joining Dina and Stephanie are CARES Foundation Pioneer Award winner Lesley Holroyd and Associate Dean of Nursing at UVA, and mom to Joey, Louise Flemming who share their expertise regarding shame and secrecy attached to this life threatening condition.  How can we "normalize" CAH? How can we ensure the medical professionals in every hospital are educated about CAH so as to end the spread of judgement before it begins? Do YOU keep your CAH, or your child's CAH, a secret?  Dina wants to hear from you! Hear their stories, share their tears and be inspired. See what can be achieved when 4 brilliant, driven women with strength, knowledge and first hand experience put their heads together to help better this amazing community.

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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*

المعلومات

  • صناع العمل
    CARES Foundation
  • سنوات النشاط
    ٢٠٢٣ - ٢٠٢٦
  • الحلقات
    ٢١
  • التقييم
    ملائم
  • حقوق النشر
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  • موقع البرنامج على الويب
    CAH PULSE

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