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*
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Season 2 I Episode 12: Non-Classical CAH - Fertility Treatment and the Importance of Genetic Testing (00:30:03)
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 sa...
Season 2 l Episode 11: Dimitri: The Long Game of Drug Discovery (00:38:21)
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-sc...
Season 2 l Episode 10: Brittany: Demanding Change After a Lack of Answers and Getting Nowhere (00:38:24)
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 todd...
Season 2 | Episode 9: Kristina: "We're going to call your baby...'Baby'" - Removing the Stigma from CAH (00:42:27)
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 Fran...
Season 2 | Episode 8: Lesley and Louise: No Shame! Putting an End to the Secrecy of CAH (00:38:12)
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 adult...
Season 2 | Episode 7: "Go Live Your Life as Normally as Possible" But...Nothing About CAH is Normal (00:34:56)
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 ...
Season 2 | Episode 6: Dr Su: Words of Wisdom: Clearing up the Confusion of Stress Dosing (00:32:32)
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 Corne...
Season 2 | Episode 5: Raelie: CAH Does Not Define THIS Ten Year Old! (00:35:46)
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. T...
Season 2 | Episode 4: Abby: CAH Mom? Or NASCAR Driver! (00:31:36)
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...
Season 2 | Episode 3: Ryan: The Son of a Rainbow Maker (00:37:34)
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...
Season 2 | Episode 2: Lydia: "I had no idea getting married and having children was a thing" (00:38:17)
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 unde...
Season 2 | Episode 1: Marc: Living Life to it's Fullest - "Nothing Holds Me Back" (00:37:49)
Marc wasn't formally diagnosed with salt wasting CAH until he was the age of 3. Up to that point, Marc's mother had spent his infant and pre-school years simply trying to prevent him from vomiting all...
Season 1 | Episode 6: "The Hospital Refused to Recognize my Daughter as a Girl" (00:38:41)
Welcome to another astonishing CAH story. In this 6th episode of CAH Pulse, Stephanie and Dina learn the startling details of David and Brianne's CAH journey with their little girl who was born into ...
Season 1 | Episode 5: Lindsey - "I Wish I Had Known More When I Was 16, 15 even 14" (00:37:06)
"We can assume kids are gonna have questions; so create a relationship outside of CAH and the rest will follow". One of the poignant thoughts belonging to Lindsey, a warm hearted, outspoken young woma...
Season 1 | Episode 4: Trust Yourself - College Life with CAH (00:33:50)
There are varying degrees of fear that parents experience while raising a child with CAH. These fears are often from the challenges of medicating their child properly to ensure their safety from a loo...
Season 1 | Episode 3: Lesley Part 2 - ”I Don’t Want Others To Feel Like I Did” (00:28:54)
Despite her difficult journey, Lesley, who grew up in a children's home in England, continues her explanation of how she moved to the states and got the help she needed after living most of her life n...
Season 1 | Episode 2: Lesley Part 1 - Feeling Lucky (00:29:30)
When Lesley's mom was unable to care for her, she was given up to the courts of England. Join Stephanie and Dina as Lesley shares her lowest of lows, love and loss, misinformation and surgeries she wa...
Season 1 | Episode 1: Connections - You Are Not Alone (00:30:26)
Connecting with someone who knows your fears and challenges is a crusade Dina Matos, Executive Director of Cares Foundation and Stephanie Erb, long time career actress, advocate and mom of a grown chi...
