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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 the time. The only remedy that seemed to work was constant high doses of salt. Lots and lots of salt. Although she was percieved as a neurotic helicopter first time mother, and doctors simply didn't value her hunches and her conviction that something was not right, her instincts were spot on and in the end this salt heavy diet saved her child's young life.
Then, things started to make sense when Mar'c little brother was born and instantly had a life threatening adrenal crisis. Once his baby brother was diagnosed and treated for salt wasting CAH they realized marc's mother wasn't crazy after all...and so begins a life journey for 2 brothers learning how to advocate for themselves, take their own medicine, play sports (even in the heat of the summer) and live life to it's fullest without pretense or worry.
Join Dina and Stephanie as they speak with Marc and hear his inspiring story of hope and relief in the face of a life long incurable condition. Marc's calm and poise will leave you embracing his empowering direction for adults, parents and kids growing up with salt wasting CAH.
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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.
David and Brianne open up about their harrowing journey from their daughter's adrenal insufficiency to her atypical genitalia. They explain the hardships of giving birth with COVID-19 protocols, including social distancing and the miscommunication it had caused. They also lament about the hospital staff's position of not recognizing their daughter as a girl with the recommendation that they wait to name their baby.
Join Stephanie and Dina as they uncover the shocking lack of understanding, empathy and support this resilient family endured in their 3rd trimester of pregnancy through the first weeks of their precious baby's life.
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Manglende episoder?
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"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 she humbly navigates life unsure of the full details of her CAH.
In this impactful episode Lindsey opens up to Dina and Stephanie about many topics including an over due conversation she wishes she had had 20 years ago as well as a detailed account of her recent life-threatening adrenal crisis, a first on CAH Pulse.
Finally, Lindsey unlocks a valuable lesson which may change the way parents speak to their children, whether r not their child is living with CAH.
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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 Joey, is living proof.
Join Dina and Stephanie as they speak with Joey a sophomore at Duke University, who claims that trusting yourself is one of the keys to living with CAH successfully as a collage coed. He explains how he has made it possible to experience college, away from home, taking classes and enjoying his time in the dorm with friends just as a typical student would! Joey is an exceptional, resilient and responsible 19 year old who unlocks his secrets to transitioning from being a child to becoming a young adult living on his own with CAH.
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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.
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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.
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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. Here Stephanie tells her shocking story of adopting a child at birth with CAH, a rare genetic disease, and becoming a strong advocate for others with the condition and Dina who explains after hearing a parent ask "how long is my child going to live?" one too many times, exactly why she has such heartfelt dedication to helping those living with CAH. After hearing Dina and Stephanie's introduction, you will be left with a world of hope for these patients as well as the message that a CAH child can indeed live a full, typical and beautiful life. Join Dina and Stephanie on their first of many conversations to illuminate the value of this incredible CAH village and how there is always room for more to come along for the ride.
