Episodes

  • Season 2 I Episode 12: Non-Classical CAH - Fertility Treatment and the Importance of Genetic Testing
    Jan 30 2026

    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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    30 mins
  • Season 2 l Episode 11: Dimitri: The Long Game of Drug Discovery
    Dec 2 2025

    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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    38 mins
  • Season 2 l Episode 10: Brittany: Demanding Change After a Lack of Answers and Getting Nowhere
    Oct 17 2025

    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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    38 mins
  • Season 2 | Episode 9: Kristina: "We're going to call your baby...'Baby'" - Removing the Stigma from CAH
    Sep 3 2025

    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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    42 mins
  • Season 2 | Episode 8: Lesley and Louise: No Shame! Putting an End to the Secrecy of CAH
    Jun 25 2025
    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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    38 mins
  • Season 2 | Episode 7: "Go Live Your Life as Normally as Possible" But...Nothing About CAH is Normal
    Apr 17 2025

    In the mid 1960's, Tim was diagnosed with CAH just weeks after he was born. His CAH simply didn’t set off many alarms with his medical team, nor his parents. As a result, he seemed to breeze through time with little challenges and even went 50 years without a single adrenal crisis! However, Tim had learned some difficult news at the age of 30, thanks to the long term effects of prescribed prednisone, when a bone scan showed that he had severe osteoporosis. At 30 years old, Tim had the bone density of a woman in her 80’s. He was finally feeling the effects of CAH. Up to that point his doctors told him to just "go live your life as normally as possible" but nothing is "normal" about CAH.

    Join Stephanie and Dina as they speak to Tim, a dad to identical twin daughters and a champion of Cares Foundation, about his sudden change in medication, the physical challenges he experienced as a result, as well as an uncharacteristic and overwhelming feeling of sadness. Tim’s roller coaster journey gives us the main facets and challenges of CAH but will leave you with much hope for the future.

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    35 mins
  • Season 2 | Episode 6: Dr Su: Words of Wisdom: Clearing up the Confusion of Stress Dosing
    Mar 5 2025

    In this masterfully eye-opening episode, Stephanie and Dina pick the brilliant mind of CARES Foundation's Medical Director, and Professor & Pediatric Endocrinologist at the NY Presbyterian Weill Cornell Medical Center, Dr Karen Su. Dr. Su helps to clear up the confusion over "stress dosing" an adult or a child living with CAH.

    Of great importance to Stephanie & Dina has been to address the idea that a stress dose needs to be administered when someone is predicted to have emotional stress. Their goal has been to highlight exactly when to administer added hydrocortisone (as well as how much!), and Dr Su is just the person to set the record straight. Do you typically stress dose before taking an exam? Before an important speech or running a marathon? Dr. Su shares her many words of wisdom by answering hypotheticals, solving scenarios and revealing the health concerns behind too much cortisol and the long term effects of Dexamethasone.

    Bring your notebook and take full advantage of all of the insightful and thought-provoking free professional insight from one of the top CAH endocrinologists in the country.

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    33 mins
  • Season 2 | Episode 5: Raelie: CAH Does Not Define THIS Ten Year Old!
    Feb 11 2025

    Is ten-year-old Raelie unphased by her CAH? Find out in this important episode of CAH Pulse where Stephanie and Dina speak with Amanda and her strong, brave and laid back 5th grade daughter, Raelie. This insightful mother daughter duo gives us an up-close view through the window of their daily lives navigating and troubleshooting life with this rare condition. Amanda explains their family hardships as well as their successes in managing her daughter's CAH, from her unsurprising fears as a mom trying to keep Raelie safe, to her hopes that the struggle will become less and less as Raelie grows so that her daughter can live life to its fullest like a typical kid, should.

    Amanda's unapologetic approach to parenting has helped Raelie be the responsible, informed kid she is without allowing CAH to define her. Also, Dina hands us some hopeful news about the progress of CAH treatments as well as news of an officially approved drug!

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    36 mins