Huntington's disease is a hereditary, degenerative brain disease that leads to uncontrolled movements, intellectual/cognitive decline, and emotional problems. Someone with a parent who has Huntington's disease has a 50 percent chance of inheriting the gene for the disease.
NewYork-Presbyterian is a world leader in Huntington's disease research and care. Huntington's disease is named for George Huntington, a graduate of College of Physicians and Surgeons at Columbia University in the 1870s, who published the first detailed clinical description of the disease's progression. In 1984, Columbia University researchers began a large-scale study of a Venezuelan community where the disease is prevalent. The results of this study formed the foundation of an international collaboration which led to the identification of the gene that causes Huntington's in 1993.
Young adults from a family with Huntington's disease can now be tested to determine if they are carriers of the disease. Doctors at the Huntington's Disease Center of Excellence of Columbia University offer comprehensive genetic counseling and testing services for individuals with a family history of Huntington's, and comprehensive care and support for those diagnosed with the disease as well as their families.
Early symptoms of Huntington's disease – mood swings, irritability, depression, clumsiness, and fidgeting – generally appear between the ages of 35 and 50. As the disease progresses over the next 15 to 20 years, patients have difficulty learning new things, making decisions, and driving, and eventually have greater difficulty thinking, feeding themselves, and swallowing.
The diagnosis of Huntington's is made through genetic testing. People who have the gene will develop the disease.
NewYork-Presbyterian's specialized multidisciplinary team of healthcare professionals provides the highest level of clinical care for Huntington's disease patients and their families. In addition to our extensive genetic testing and counseling program, we provide neurological treatment and social services, and offer assessments and referrals for psychiatric services, counseling, physical therapy, and speech therapy. Columbia's Huntington's Disease Center is unique in that it does not charge patients for their care.
While there is no cure for Huntington's disease, some medications can control the emotional symptoms and movement problems associated with the disease.
Physical, occupational, speech, and nutritional therapy all help patients maintain function as long as possible. Special equipment can help patients continue to communicate effectively, remain mobile, and ensure their safety. Rehabilitation experts at NewYork-Presbyterian Hospital work with patients throughout their care and are available to:
- Evaluate muscle strength and motor skills and develop an individualized program to maintain existing physical function.
- Recommend devices (including neck supports, canes, walkers, and wheelchairs) and equipment for the home to ensure patient's safety and mobility.
- Discuss ways to modify activities, conserve energy, and simplify work.
Research and Clinical Trials
Researchers at NewYork-Presbyterian Hospital are conducting studies to advance our understanding of the causes of Huntington's disease and to develop effective therapies. At Columbia's Huntington's Disease Center, researchers are active participants in the Huntington Study Group, a national research consortium of Huntington's disease centers.