Familial Dysautonomia - Treatment and Treatment Locations

Treatment and Treatment Locations

There currently is no cure for FD and death occurs in 50% of affected individuals by age 30. There are only two treatment centers, one at New York University Hospital and one at the Hadassah Hospital in Israel. One is being planned for the San Francisco area.

The survival rate and quality of life has increased since the mid 80's mostly due to greater understanding of the most dangerous symptoms. At present, FD patients can be expected to function independently if treatment is begun early and major disabilities avoided.

A major issue has been Aspiration Pneumonias, where food or regurgitated stomach content would be aspirated into the lungs causing infections. Fundoplications (by preventing regurgitation) and gastrostomy tubes (to provide non oral nutrition) have reduced the frequency of hospitalization.

Other issues which can be treated include FD Crises, Scoliosis, and various eye conditions due to limited or no tears.

An FD crisis is the body's loss of control of various Autonomic nervous system functions including blood pressure, heartrate, and body temperature. Both short term and chronic periodic high or low blood pressure have consequences and medication is used to stabilize blood pressure.