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...

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. 

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 prednisone, when a bone scan showed that he had severe osteoporosis. At 30 years old, Tim had the bone density of a woman in her 80’s. He was finally feeling the effects of CAH. Up to that point his doctors told him to just "go live your life as normally as possible" but nothing is "normal" about CAH.

Join Stephanie and Dina as they speak to Tim, a dad to identical twin daughters and a champion of Cares Foundation, about his sudden change in medication, the physical challenges he experienced as a result, as well as an uncharacteristic and overwhelming feeling of sadness. Tim’s roller coaster journey gives us the main facets and challenges of CAH but will leave you with much hope for the future.

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 idea that a stress dose needs to be administered when someone is predicted to have emotional stress. Their goal has been to highlight exactly when to administer added hydrocortisone (as well as how much!), and Dr Su is just the person to set the record straight. Do you typically stress dose before taking an exam? Before an important speech or running a marathon? Dr. Su shares her many words of wisdom by answering hypotheticals, solving scenarios and revealing the health concerns behind too much cortisol and the long term effects of Dexamethasone.

Bring your notebook and take full advantage of all of the insightful and thought-provoking free professional insight from one of the top CAH endocrinologists in the country.

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. 

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 world took a positive turn after college when she began speaking with a therapist and ultimately the CARES Foundation. For the first time in her life she was able to regularly meet and open up with women who are living with CAH which gave her a new appreciation, understanding and excitement for her future. 

Today, Lydia's story includes a loving husband, a toddler son and a drive to help others with CAH so that they know that they too can live typical, full lives filled with milestones, hope and most of all love.

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.