Huntington’s Disease (HD) is a genetic disorder that causes nerve cells in certain areas of the brain to decline, or break down. Eventually, this deterioration causes a variety of symptoms, including:
- Abnormal movements and impaired coordination
- Mood and personality changes
- Problems recalling information and problem-solving
As a genetic disorder, HD is passed from one family generation to the next. Children of an individual with HD have a 50% chance of inheriting the gene from his or her affected parent. Occasionally a new mutation can occur without a known family history. The Huntington’s Disease program at UVA is recognized as a Center of Excellence by the Huntington’s Disease Society of America (HDSA).
Diagnosis, Genetic Testing & Counseling
HD is diagnosed with a physical exam conducted by a neurologist, and confirmed with genetic testing. Genetic testing is also available to individuals with a family history of HD who are not yet symptomatic and is conducted by a certified genetic counselor. Our clinic follows guidelines recommended by the Huntington's Disease Society of America to help patients weigh the risks and benefits of genetic testing.
HD symptoms most often develop between the ages of 30-50. Symptoms are mild at first and are often barely noticeable but usually worsen over the course of 15-20 years. Motor, mood and behavior changes are often treatable but can still be difficult for patients and families as they progress.
Abnormal muscular and body movements may cause:
- Sudden jerks or uncontrolled movements of the limbs or trunk
- Facial grimacing
- Continuous need to turn head and shift gaze
- Walking gait that is unsteady or dance-like
- Difficulty completing voluntary tasks like dressing and caring for oneself
- Difficulty with eating and swallowing, which may result in weight loss
- Poor articulation of speech
Gradual deterioration or loss of intellectual abilities and information processing abilities may include:
- Slowed processing or difficulty processing complex information
- Loss of memory
- Loss of ability to think rationally
- Loss of judgment
- Confusion or disorientation
- Trouble with attention and awareness
Mood changes and behavioral issues may include:
- Abrupt mood changes
- Social withdrawal or antisocial behavior
- Irresponsible behavior
- Obsessive-compulsive behavior
- Personality changes
- Psychosis — a severe emotional and behavioral disorder that often interferes with a person's ability to relate to others and to function in daily life
- Paranoia — a mental disorder that involves feelings of being watched, followed or harmed by others
- Hallucinations — the perception of a thing or person that is not present
Ultimately, individuals with HD will be unable to work independently, need assistance with activities of daily living, and will eventually require full-time care.
Treatment at UVA's Huntington's Disease Clinic
There's no cure for HD, but there are many pharmaceutical and therapeutic treatments that can help control HD symptoms. At UVA, we focus our care and treatment on patient safety, independence and quality of life.
Specialized Therapeutic Support
Our physical therapists, occupational therapists and speech language pathologists design personalized plans to help reduce motor-and-communication-related HD symptoms. These strategies aim to improve quality of life for those impacted by an HD diagnosis.
Patients can be seen in remote locations to save time and expenses instead of traveling to Charlottesville with our telemedicine program. Find a location near you to receive telemedicine services.
Social Work Services
Our social workers provide ongoing support and counseling for patients and family members as they navigate life with HD. We also provide referrals and information on programs and organizations that offer resources for HD families.
At UVA, we routinely share opportunities to participate in research studies, both at UVA and elsewhere. We are focused on understanding the disease, improving symptom management and ultimately finding a cure for HD. Access advanced treatments by participating in clinical trials.
Content was created using EBSCO’s Health Library. Edits to original content made by Rector and Visitors of the University of Virginia. This information is not a substitute for professional medical advice.