CAH PULSE

In this encouraging episode of CAH Pulse, Dina and Stephanie talk to Allyson who is gracefully navigating life with CAH. Allyson eagerly shares her journey from being diagnosed at birth to becoming an athlete, an aspiring mentor for others in the CAH community and a motivated, thriving young adult. An avid swimmer and rock climber, there’s no mistaking Allyson’s positivity and drive when she lovingly mentions her supportive parents who allowed her to live as a typical child. When she opens up about her surgeries, her seizures, college life and the biggest challenge of all; finding an adult endocrinologist who actually knows what CAH is… it becomes apparent that Allyson finds power in being an open book. Finally, Allyson doesn’t miss a chance to share her mindset about living with this rare and difficult condition; giving sage advice to parents, kids and young adults so they too can gain the strength to resist limitations and most of all shame. Her inspiring words that being different “is what makes you, good” is also what makes this memorable episode of CAH Pulse so hopeful.

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!

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.

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.

"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.

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.

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.