by CARES Foundation
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*
Language
🇺🇲
Publishing Since
11/13/2023
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April 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.
March 5, 2025
In this masterfully eye-opening episode, Stephanie and Dina pick the brilliant mind of Cares Foundation's medical director, professor and pediatric endocrinologist at the Presbyterian Weil Cornell Medical Center in New York, Dr Karen Su to clear up the confusion over just how much to "stress dose" a person or a child living with CAH. Dispelling the idea that a stress dose needs to be administered when someone is predicted to have emotional stress, has been of great importance to Stephanie and Dina. 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.
February 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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