CAH PULSE cover art

CAH PULSE

CAH PULSE

Written by: CARES Foundation
Listen for free

About this listen

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*Copyright 2023 All rights reserved. Economics Hygiene & Healthy Living Management Management & Leadership Physical Illness & Disease Science
Episodes
  • Season 2 l episode 11 Dimitri: The Long Game of Drug Discovery
    Dec 2 2025

    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 journey in an accessible, fascinating way—complete with scientific surprises, first hand patient insights and the grit it takes to spend decades pursuing a single advancement. From basements to breakthroughs and an unwavering commitment to helping patients living with CAH, join Stephanie and Dina as they uncover Dr Dimitri's journey of research, perseverance and success.

    Show More Show Less
    38 mins
  • Season 2 l Episode 10: Brittany: Demanding Change After a Lack of Answers and Getting Nowhere
    Oct 17 2025

    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 fracture. Her path also includes a life changing moment after meeting others for the first time who are also living with CAH, with help from CARES. Brittany's collective experiences have inspired her to make a difference in the CAH community by helping to connect others. She makes clear her inclination that there be more research, more mental health understanding and awareness, to eradicate the use of steroids and to finally find a cure. Oh, and don't forget the donuts...

    Show More Show Less
    38 mins
  • Season 2 | Episode 9: Kristina: "We're going to call your baby...'Baby'" - Removing the Stigma from CAH
    Sep 3 2025

    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, Kristina was told "something is wrong with your baby, your baby has ambiguous genitalia". Grappling with not knowing what that could have meant, Kristina simply replied, "is my baby going be alright?" and "is she going to live?" Due to the all too familiar lack of knowledge and professionalism on the hospital's behalf, Kristina was left alone, terrified, contemplating her new life with a baby she had yet to meet.

    Kristina's story also includes the hospital's suggestion to not add "female" to Franny's birth certificate, a NICU doctor who would only identify Franny as the "baby" and Kristina's subsequent overwhelming feeling of disappointment and fright for what the future held for her family...especially her brand new baby girl Franny.

    With Stephanie's and Dina's wisdom and experience, the three women embark on a voyage to squash the stigma attached to CAH with the goal to give Franny and other children and adults living with CAH a healthy life free of stress, judgement and grief.

    Show More Show Less
    42 mins
No reviews yet