CAH PULSE
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*
Episodes
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 an uncertain world. Not only was her birthday during the height of the COVID-19 pandemic, but their newborn was diagnosed with salt-wasting CAH in a hospital with medical professionals who knew little to nothing about the condition.
Da...
"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 woman who shares her compelling story of growing up in the midwest as a typical girl with friends, playing sports, going to college and now at 30, working as a geographic information systems technician. However, atypically, she shares how ...
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 looming adrenal crisis. Understandably, anxiety and worry can be off the charts. But Cares Foundation wants you to feel rest assured, with the proper attention to detail and care management those with CAH can live a typical life! And Jo...
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 not knowing she had CAH. This is the second of a 2 part series where Lesley wraps up her inspiring story of survival, connections and giving back.
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 was never told why she had. Living most of her life unknowingly with CAH, Lesley’s is a story of survival, victory, resilience, giving back and feeling lucky.
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 child with Congenital Adrenal Hyperplasia have been on together. They bring us this compelling first episode of CAH Pulse, a podcast born and bred to educate, connect and give hope to those living with this challenging rare condition. Her...
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