Huntington's Disease

 
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Huntington's Disease

In March 2000, the Huntington's Disease Society of America named the University of Virginia Health System a Center of Excellence for the care of patients with HD and their families. The UVa HD Program was one of the first 10 Huntington's Centers of Excellence in the nation and is the only one in Virginia.

What is Huntington's Disease?

Huntington's disease (HD) is a degenerative disease of the central nervous system.  It causes a movement disorder, personality changes, and intellectual decline.  Emotional and behavioral changes such as depression, irritability, anxiety, aggressive outbursts, mood swings, and social withdrawal can occur in people with HD.  Thinking abilities such as short-term memory and organizational and coping skills may be impaired.  Physical symptoms such as fidgeting, twitching and difficulties in coordination may appear, gradually leading to more obvious involuntary movements of the head, trunk, and limbs as the disorder progresses.  The ability to walk and maintain balance may be affected, as well as speech and swallowing.  Symptoms typically become worse as time passes, so treatment is adjusted to respond to the patient's needs.  At present, there is no cure for HD, although there are medications available to help manage symptoms.  Assistance through physical and occupational therapy and speech/swallowing therapy can enhance independence and quality of life.

HD is a genetic disorder that is passed from one generation to the next. Each child of a parent with HD has a 50% chance of inheriting the gene that causes HD. Both males and females may have HD and may transmit the gene to sons and daughters. All ethnic groups are affected. The symptoms of HD usually appear during the late 30s to mid-40s, but sometimes become apparent in young children or the elderly. Anyone who has the gene for HD will eventually develop symptoms of this condition.

Are you at risk for HD?

We can help you find the answer. Our Predictive Testing program is for individuals who have a family history of Huntington's Disease and want to know if they have inherited the HD gene. Our program follows the protocol recommended by the Huntington's Disease Society of America and endorsed by academic centers and testing laboratories nationwide. It is designed to help each person weigh the risks and benefits of undergoing testing.

Learn more about our Predictive Testing Program.

Our Huntington's Clinic

I have dealt with Huntington's in my family for almost 25 years. The UVa Clinic staff are always available and eager to help with every need we have. --Mother of a Patient

 

The HDSA Center of Excellence at the University of Virginia holds an out-patient, multidisciplinary clinic for individuals with HD and their families.  Each clinic visit is tailored to the needs of the individual.  During the visit, patients can receive care and attention from:

  • Neurologist
  • Psychologist
  • Nurse practitioner
  • Physical Therapist
  • Occupational Therapist
  • Speech/swallowing Therapist
  • Social Worker
  • Genetic Counselor


The clinic is held once a month.  Patients are usually seen every 6 to 8 months.

An appointment at the HD Clinic can be made by contacting the HD Program Coordinator.  The toll free number is (800) 251-3627, ext. 4-2665; the direct number is (434) 924-2665 (Medical Genetics).

Research Projects

We participate in clinical trials related to HD.

Find a physician specializing in Huntington's.