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 lovin...

Born with salt-wasting CAH before newborn screening existed, Julia Anthony spent much of her childhood, high school and even college days in hospitals dealing with adrenal crises; which did not stop her from playing sports or having plenty of fun. However, in hindsight, it did change her in a most positive way. In this inspiring and animated conversation, Dina and Stephanie uncover how Julia’s exp...

In this powerful episode of CAH Pulse, Becky, shares her deeply personal journey navigating her newborn daughter’s unexpected CAH diagnosis. What was planned to be a joyful home birth turned into a whirlwind of uncertainty, medical urgency, and a near death experience for her newborn. From frustrating medical guidance and the uncertainty of not knowing the sex of her baby to the emotional highs an...

When Lupe’s daughter Christina was born, everything changed in an instant. After a difficult pregnancy and an unexpected diagnosis of CAH, Lupe found herself navigating a condition she had never heard of. In this episode of CAH Pulse, Stephanie and Dina learn about Lupe’s emotional early days of Christina’s diagnosis, the powerful reassurance from doctors that set the tone for her life, and how he...

In this uplifting episode of CAH Pulse, Stephanie and Dina talk with the unflappable 17-year-old Karter, who shares his experiences as a high school student-athlete living with salt-wasting CAH. Karter’s unique and straightforward approach to managing his CAH as well as his advocacy and action is a perfect antidote to the confusion, stress, and stigma often associated with this condition. He tells...

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 salt-wasting CAH (classical) and non-classical CAH which is often misunderstood, frequently under-diagnosed, and highly individualized.  The experts share their thoughts on if and when treatment makes s...

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-scenes look at how medications are discovered, tested, and brought to life. From the origins of CRF research to the challenges of treating a rare disease like CAH, Dimitri explains the drug-development...

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 toddler, thanks to her mother's intuition and advocacy, to her drive to find a cure for CAH.  Along the way Brittany reveals she has suffered from weight gain, severe acne and even a femoral stress fractu...

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 Franny through her now fifteen months of life, including feeding routines, hospital visits, medication and explaining her condition to family, day care and friends. Unsurprisingly, the day Franny was born...

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 adults living with CAH encounter, causing adverse effects on their lives.  This episode is a crusade to make a difference to the lives of so many who live in darkness and risk thanks to the dangerous and u...

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 prednis...

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 Cornell Medical Center, Dr Karen Su. Dr. Su helps to clear up the confusion over "stress dosing" an adult or a child living with CAH. Of great importance to Stephanie & Dina has been to address the...

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 hardshi...

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 things like swallowing medication in pill form and being the happiest joyful baby Abby could have hoped for.   However, not everything with baby Nash is status quo. Yes, although proving to be challe...

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...

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 understanding about her condition.  As a young adult, Lydia reveals that she foolishly decided to test the importance of taking her medication by eliminating it altogether.   She also explains how her wor...

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...

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...

"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. H...

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 C...

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 t...