Huntington Disease (HD)

Huntington disease (HD or Huntington chorea) is a condition characterized by a loss of the nerve cells in the brain region called the striatum. It is a genetic condition. A child of a person with Huntington disease has a 50% chance of inheriting the gene that causes this disease. If you have the gene, you will get the disease and you can pass it on to your children.

Although the gene is present from birth, the illness usually does not appear until mid-life. Juvenile Huntington disease appears before the age of 20. Most people with this condition do not die as a direct result of the disease, but rather from other medical problems such as injuries from falls, infections, choking, or pneumonia. Because different areas of the brain may be affected in different people, your symptoms may not be the same as those of your parents.

HD symptoms vary from person to person, but there are generally three stages everyone goes through.

  • In the early stage of HD, the person usually has mood problems such as depression or irritability. The person may not function well at home or work.

  • In the second stage, the movement disorder may become more apparent. Diminished speech and trouble swallowing may also appear.

  • In the final stage, the person with HD becomes totally dependent on others for all care. In addition, the person is unable to walk or speak and loses significant weight. Generally, however, the person with HD is still able to understand language and remain aware of family and friends.

Specific symptoms of HD include:

  • Rapid, jerky movements (chorea)

  • Unsteady gaits

  • Trouble with speech, swallowing, balance, and walking

  • Loss of mental abilities and memory, confusion and inability to concentrate

  • Emotional changes: mood swings, irritability, depression, anxiety, anger, or social withdrawal

  • Hallucinations

  • Weight loss

There is no known cure for this disease. Medicine can be given to control some of the symptoms.

Children of a person with this illness can be tested to find out if they have the gene. Ask your healthcare provider to refer you to a genetic counselor to discuss the pros and cons of testing.

Home care

If you have been prescribed medicine, take it as directed.

To prevent falls:

  • In the home, remove scatter rugs, electrical cords, or anything else that may cause a fall.

  • In the bathroom, use non-slip bath mats and install grab bars.

  • Be sure your shoes fit properly, have non-slip bottoms and are in good condition.

  • Be cautious when going up and down curbs, and walking on uneven sidewalks.

  • Physical therapy is advised early on.

Ask your health care provider about a physical therapy evaluation for an assistive walking device

Talk to your doctor or lawyer about getting a power of attorney for healthcare and for financial decisions. It is best to do this while you can still sign legal documents and make your own legal decisions. Otherwise, a court order will be required.

Follow-up care

Follow up with your healthcare provider as advised.

For more information, contact:

  • National Institute of Neurological Disorders and Stroke 800-352-9424, www.ninds.nih.gov

  • Huntington's Disease Society of America 800-345-4372, www.hdsa.org

When to seek medical advice

Call your healthcare provider if any of the following occur:

  • Fever of 100.4º F (38º C) or higher, or as directed by your healthcare provider

  • Frequent falling

  • Refusal to eat or drink

  • New or worsening depression, agitation, or anxiety

Call 911

Call 911 or get immediate medical care if any of the following occur:

  • Shortness of breath or rapid breathing

  • Violent behavior

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