The 38-year-old Dysautonomia Treatment and Evaluation Center at the New York University Medical Center has, in a few months’ time, undergone a vast expansion.
Between November 2007 and this past February, the space the center occupies doubled, the center’s staff more than doubled and the equipment used was “really enhanced,” according to center director Felicia Axelrod.
Dysautonomia is a general term used to describe dysfunction of the autonomic nervous system. It can be caused by a number of diseases. More specifically, one of these disorders, familial dysautonomia, is an inherited progressive neurogenetic disorder that affects the sensory and autonomic nervous systems. Patients suffering with it experience “autonomic crises” that may include cyclical vomiting, life-threatening episodes of high blood pressure and increased heart rate, and sweating with fever. They often have lung and kidney problems. While the center originally focused on FD, it also receives requests to see patients with other types of dysautonomia.
Axelrod said the expansion came about as a “natural evolution,” aided by the discovery of the FD gene in 2001, improving therapies for patients.
As a result of these efforts, she said, FD patients are living longer. Thanks to these efforts, she said, FD patients are maturing and creating an adult population that has the disease, rather than dying early deaths. David Brenner, executive director of the Dysautonomia Foundation (the leading funder of the center), estimated that the average lifespan of an FD patient has risen to between 30 and 40 years, up from five years a few years ago.
The center is the only one of its kind in the United States.