CAH PULSE

By: CARES Foundation
  • Summary

  • 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*
    Copyright 2023 All rights reserved.
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Episodes
  • Abby: CAH Mom? Or NASCAR Driver!
    Jan 7 2025
    In another compelling episode, Dina and Stephanie introduce us to Abby, a mom of two small boys, one of which is her “salt waster”. Little Nash is only seven months old but he is already doing amazing things like swallowing medication in pill form and being the happiest joyful baby Abby could have hoped for. However, not everything with baby Nash is status quo. Yes, although proving to be challenging, his family is managing his CAH quite well. Except for one night when her husband was out of town, Abby was faced with what to do when baby Nash was throwing up uncontrollably and turned a shade of white she had never seen before. What unfolds next is a learning experience every new parent who has a baby living with CAH should hear. In this episode, Abby tells her frightening story about what she was sure was her baby’s first adrenal crisis. From her NASCAR ride to the hospital, to telling her 7 month old not to be so dramatic during a blood draw, to finally explaining emphatically to the doctors what she knows her baby needs, Abby is a true crusader as a new CAH mom. Her super power has been learning as she goes from a group of doctors and advocates but above all, she realizes she is learning the most from her own experiences, understanding what works best for her child on his life-long journey with CAH.
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    32 mins
  • Season 2 | Episode 3: Ryan: The Son of a Rainbow Maker
    Oct 29 2024

    In this memorable episode, Ryan, who has seemed to manage his classic salt wasting CAH head-on with an organized, matter of fact approach, has been faced with new challenges to consider now that he is in his 30's. Ryan's mom, Heidi, knew in his first 2 weeks of life that something was just not right with her baby and thanks to her intuition and diligence she did not stop until the hospital found a diagnosis. Once she was told her newborn had CAH, she began her quest to give Ryan the very best life she could, filled with independence, knowledge, responsibility and most of all positivity. Ryan credits his mom for being his rock, leading him to live a typical life filled with adventure, fun and love.

    Join Stephanie and Dina as they visit with Ryan and unveil how he has navigated living with CAH from elementary school, through college and recently marriage as well as his difficult relationship with the powerful steriod "Dex" and how grateful he is for every one in his life who has helped him on his journey with this rare condition.

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    38 mins
  • Season 2 | Episode 2: Lydia: "I had no idea getting married and having children was a thing"
    Sep 3 2024

    In this episode of CAH Pulse, Stephanie and Dina speak with Lydia who was diagnosed with classic CAH at birth and although she received relatively good medical care from the start, she had little understanding about her condition. As a young adult, Lydia reveals that she foolishly decided to test the importance of taking her medication by eliminating it altogether.

    She also explains how her world took a positive turn after college when she began speaking with a therapist and ultimately the CARES Foundation. For the first time in her life she was able to regularly meet and open up with women who are living with CAH which gave her a new appreciation, understanding and excitement for her future.

    Today, Lydia's story includes a loving husband, a toddler son and a drive to help others with CAH so that they know that they too can live typical, full lives filled with milestones, hope and most of all love.

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    38 mins

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