UW Designated Center of Excellence for Huntington’s Disease

The first symptoms of Huntington’s disease, uncontrollable movements, usually appear in midlife. The condition slowly worsens over the next 15 years or so until patients are bedridden and barely able to swallow. Cognitive ability also declines. Eventually people with the disorder die of pneumonia, choking, or other complications.

One of the more common genetic disorders, Huntington’s afflicts some 30,000 people in the United States. Approximately 75,000 more have the gene and will develop the disease in later adulthood. There’s an even chance that any child of a victim will inherit the defective gene and suffer the same fate. Huntington’s devastates the lives of entire families emotionally, socially and economically.

To help patients and families facing this disease, the UW has become a hub of Huntington’s research and clinical care. The UW’s clinics have cared for about 450 affected families, well over 1000 cases in all. In 2002, the Huntington’s Disease Society of America designated the UW a Huntington’s Center of Excellence.

The UW participates in two national studies to detect the earliest signs and symptoms. UW researchers in the departments of Genome Sciences and Laboratory Medicine and at the Fred Hutchinson Cancer Research Center are investigating the molecular biology of the defective gene.

At the UW Huntington’s Center, physical therapists and speech therapists help patients with their movement disorder and with talking and swallowing problems; counselors advise families about genetic testing and coping with the results; a social worker assists with economic and community services; and clinicians allay symptoms with medications.

“These are people desperate for help,” said the Huntington’s Center director Dr. Thomas Bird, professor of neurology and of medicine. “We try to give it any way we can.”

In the past fiscal year the Huntington’s Disease Research Fund received a number of gifts. Many of them were given in joyous celebration of a couple’s marriage. A significant percentage of gifts to UW Medicine are made in this fashion -- to commemorate birthdays, weddings and anniversaries, in memory of family and friends, or in gratitude for assistance, care or friendship.