“With CAH, you’re always planning and worried.” Jihan’s two daughters are living with congenital adrenal hyperplasia (CAH).

The birth of Jihan’s first daughter, Bella, was traumatic. She and her husband were totally unprepared for the diagnosis of congenital adrenal hyperplasia (CAH) and struggled with the way the news was delivered to them. Their health care providers failed to provide adequate instructions about the care of a baby who is fragile due to adrenal insufficiency. The first two weeks of Bella’s life were frightening, as her parents tried to get the care that she needed and learn how to care for her at home. Twelve years later, Jihan’s youngest daughter, Alessia was also born with CAH. This time they were prepared.

Adam Shaywitz, endocrinologist, and Chief Medical Officer at BridgeBio Gene Therapy provides an overview of CAH. He describes how CAH affects the adrenal glands, two tiny walnut sized organs which rest on top of the kidneys. The adrenal glands produce critical hormones which regulate blood pressure and play a critical role in how the body manages stress. With too little of these important hormones, patients can go into adrenal crisis, which can be life threatening.