Comprehensive Care Center for Congenital Adrenal Hyperplasia (CAH)

Congenital Adrenal Hyperplasia (CAH) is a group of inherited medical conditions in which the adrenal glands do not function properly. There are several forms of CAH, all caused by different enzyme deficiencies, which cause insufficient production of cortisol (stress hormone) along with the underproduction or overproduction of various other hormones. Patients may not produce enough aldosterone (salt-retaining hormone) and may produce high levels of androgens (such as testosterone).

The Comprehensive Care Center for Congenital Adrenal Hyperplasia healthcare team includes pediatric and adult endocrinologists, urologists, surgeons, newborn medicine specialists, nurse practitioners, patient care coordinators, nutritionists, geneticists, genetic counselors, reproductive specialists, and mental health providers. We provide expert treatment for all classical, non-classical and rare types of CAH.

The program is led by Co-Medical Directors, Drs. Karen Lin Su and Oksana Lekarev, and Surgical Director, Dr. Dix Poppas.

Services & Programs

Our specialists work together to provide a comprehensive plan for your child. We offer:

• Medical treatment from birth to adulthood
• Surgical consultation and treatment for families and patients who wish to learn about genital surgery for girls with classical CAH
• A transitional care program for adolescent children, to teach advocacy for their own healthcare as they enter their adult years
• Psychosocial support for children and families
• Nutritional counseling from registered nutritionists
• Genetic counseling and prenatal testing for parents who know they carry the CAH gene
• Coordination of other medical care, including referrals to physicians with CAH treatment expertise
• Investigational therapies and the opportunity for children to participate in clinical trials that test new ways to care for CAH patients

What Sets us Apart

• The Comprehensive Care Center for Congenital Adrenal Hyperplasia is the nation's first to be designated as a ‘center of excellence’ by CARES (Congenital Adrenal Hyperplasia Research Education and Support) Foundation.
• We have multiple specialists working together and are therefore able to address various needs of our patients from birth into adulthood within one academic medical center.
• Our surgical director is one of the most experienced surgeons in the country working with children and adults with CAH.
• Our Co-Medical Director also serves as the Medical Director of the CARES Foundation.
• We see a large number of patients with CAH from all over the U.S. and the world, making us one of the most experienced groups in the country.

Resources

• CARES (Congenital Adrenal Hyperplasia Research Education and Support) Foundation
• Genetic and Rare Diseases Information Center – Congenital Adrenal Hyperplasia