Support for Familial Dysautonomia

NYU Langone familial dysautonomia experts provide ongoing care to monitor for and treat complications of the condition in children and adults.

Experts at the Dysautonomia Center perform comprehensive medical evaluations every 6 to 12 months. During these visits, our team may perform a number of tests to evaluate blood pressure, vision, breathing, lung function, balance, and other areas that may be affected by the condition. Children with familial dysautonomia receive care at the Dysautonomia Center through Hassenfeld Children’s Hospital at NYU Langone.

Eye Exams

NYU Langone experts perform regular eye exams to monitor for common eye complications of familial dysautonomia, including nerve problems and dry eye.

Our doctors may perform optical coherence tomography scanning, which provides a high-resolution image of nerves in the retina, a thin layer of tissue that lines the inner surface of the eye. 

For people with dry eye, our doctors also offer treatments to increase eye moisture and prevent corneal injury. These treatments are especially important for those who use ventilation during sleep to prevent sleep apnea.

Access to New Treatments

Researchers at NYU Langone’s Dysautonomia Center are studying the effectiveness of several new treatments to address some of the most serious complications of familial dysautonomia. People who are treated at NYU Langone may have access to new antinausea medications, blood pressure medications, and therapeutic strategies to improve balance and prevent injuries.

Our doctors are also helping to develop new gene therapies to produce IκB kinase complex associated protein (IKAP), which is essential for the development and survival of nerve cells.

Emotional Support

Psychologists at NYU Langone offer support for children, adults, and families who are living with familial dysautonomia. Our team can also offer advice about relaxation therapy and other techniques to help children and adults with familial dysautonomia control emotions before they trigger symptoms, such as high blood pressure.

Families may seek additional support from NYU Langone’s Sala Institute for Child and Family Centered Care, part of Hassenfeld Children’s Hospital.