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?
Do You Have A Genetic Risk?
Our Huntington's Clinic
Additional Services
Research Projects
Center of Excellence Award Article

What is Huntington's Disease?

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. Symptoms vary widely, but three areas are commonly affected: personality, thinking and movement.

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, 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 can speech and swallowing.

Symptoms typically become worse as time passes, so treatment is changed to try to respond to the patient's needs.

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 University of Virginia Health System has a Huntington's Clinic that draws people from hundreds of miles away. Each clinic visit is tailored to the needs of the individual patient. During any visit to our multidisciplinary clinic our patients can receive care and attention from:
  • neurologists
  • psychiatrists
  • neuro-psychologists
  • physical therapists
  • occupational therapists
  • speech pathologists
  • nutritionists
  • genetic counselors
  • social workers.

Support Groups

My daughter looks forward to making the trip, even though it's a five hour ride for us. They have a support meeting….with very informed speakers.

--Mother of a Patient
Our patients can also attend a support group while their caregivers attend a support group of their own. These meetings are an invaluable opportunity to talk with other families for ongoing support and to reduce the sense of isolation that many patients and caregivers feel. Anyone with an interest in HD may attend without an appointment. A schedule of talks and meetings is available from Pat Allinson, M.S., at (434) 924-2665.

Meeting special needs

My wife and I are impressed with the program….It is very helpful to both patients and caregivers.

--Brother-in-law of a Patient 
In addition to the multidisciplinary care provided by the Huntington's Clinic, our patients and their families can take advantage of a range of helpful services, including special meals and transportation.

Research Projects

In addition to our clinical trials, we are conducting research into ways that HD affects patients' daily lives. For example, driving can be affected by progressive Huntington's Disease. Dr. Daniel Cox, from the Departments of Psychiatric Medicine and Internal Medicine, is investigating the effects of HD on driving. He is recruiting individuals with HD who:
  • have been diagnosed with HD for at least a year,
  • are currently driving,
  • either have had no moving vehicle violations since the diagnosis of HD, or have had two or more moving vehicle violations since the diagnosis of HD, and
  • do not suffer from either motion sickness or car sickness.
Individuals who are interested in participating will be asked to donate about one hour of time to drive a driving simulator and answer some questions about driving habits. In exchange for their contribution, they will learn their driving scores relative to others, and they will receive a UVA driving mug. All results will be confidential. For questions and appointments to participate in the study, please call the Behavioral Medicine Center at (434) 924-5314; toll-free long distance number is 1-800-251-3627, ext. 4-5314.  
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