PODCAST · science
CAH PULSE
by CARES Foundation
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
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Season 3 | Episode 6: Allyson Part 2 - The Good Kind of Stubborn: An Athlete's CAH Story
Can you compete in an Ironman while living with CAH? Allyson says, absolutely! In this episode of CAH Pulse, Allyson returns to share her lifelong journey as an athlete with CAH, which all began for her when she was a child as a competitive swimmer. Now, as a young adult, Allyson is training for...
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Season 3 | Episode 5: Allyson’s Journey: “Different is What Makes You Good”
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…
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Season 3 | Episode 4: From Patient to Pioneer: Julia Anthony Always Goes Big
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…
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Season 3 | Episode 3: A Mother’s Gut is Never Wrong - Becky’s Unexpected Journey
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...
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Season 3 | Episode 2: Lupe and Christina: Raising a CAH Superstar
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...
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Season 3 I Episode 1: Karter - "You gotta just do it" - Insights Positivity and Advice from a Seventeen-Year-Old Salt Waster
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…
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Season 2 I Episode 12: Non-Classical CAH - Fertility Treatment and the Importance of Genetic Testing
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...
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Season 2 l Episode 11: Dimitri: The Long Game of Drug Discovery
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...
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Season 2 l Episode 10: Brittany: Demanding Change After a Lack of Answers and Getting Nowhere
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…
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Season 2 | Episode 9: Kristina: "We're going to call your baby...'Baby'" - Removing the Stigma from CAH
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…
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Season 2 | Episode 8: Lesley and Louise: No Shame! Putting an End to the Secrecy of CAH
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...
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Season 2 | Episode 7: "Go Live Your Life as Normally as Possible" But...Nothing About CAH is Normal
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…
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Season 2 | Episode 6: Dr Su: Words of Wisdom: Clearing up the Confusion of Stress Dosing
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...
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Season 2 | Episode 5: Raelie: CAH Does Not Define THIS Ten Year Old!
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...
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Season 2 | Episode 4: Abby: CAH Mom? Or NASCAR Driver!
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…
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Season 2 | Episode 3: Ryan: The Son of a Rainbow Maker
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...
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Season 2 | Episode 2: Lydia: "I had no idea getting married and having children was a thing"
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...
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Season 2 | Episode 1: Marc: Living Life to it's Fullest - "Nothing Holds Me Back"
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...
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Season 1 | Episode 6: "The Hospital Refused to Recognize my Daughter as a Girl"
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…
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Season 1 | Episode 5: Lindsey - "I Wish I Had Known More When I Was 16, 15 even 14"
"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,...
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Season 1 | Episode 4: Trust Yourself - College Life with CAH
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…
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Season 1 | Episode 3: Lesley Part 2 - ”I Don’t Want Others To Feel Like I Did”
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...
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Season 1 | Episode 2: Lesley Part 1 - Feeling Lucky
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...
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Season 1 | Episode 1: Connections - You Are Not Alone
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...
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ABOUT THIS SHOW
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*
HOSTED BY
CARES Foundation
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Frequently Asked Questions
How many episodes does CAH PULSE have?
CAH PULSE currently has 24 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is CAH PULSE about?
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...
How often does CAH PULSE release new episodes?
CAH PULSE has 24 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to CAH PULSE?
You can listen to CAH PULSE on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts CAH PULSE?
CAH PULSE is created and hosted by CARES Foundation.
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