Huntington Disease (HD)

Huntington disease (HD or Huntington chorea) is a condition where nerve cells in the brain region called the striatum are lost. It is a condition that runs in families (genetic). A child of a person with Huntington disease has a 1 in 2 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.

The gene is present from birth, but the illness usually does not appear until mid-life. Juvenile Huntington disease appears before the age of 20. Most people with this condition don't die from the disease. Instead they die from other health 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 3 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. The person may have problems with talking or trouble swallowing.

  • In the final stage, the person with HD becomes totally dependent on others for all care. The person also is unable to walk or speak and loses a lot of weight. But generally, the person with HD is still able to understand language and remain aware of family and friends.

Specific symptoms of HD include:

  • Rapid, jerky, or writhing 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 clutter, scatter rugs, electrical cords, or anything else that may cause a fall.

  • Put smoke alarms in every room, including the kitchen and the bathroom. Keep the batteries charged.

  • Put good lighting in all areas of the house. Use nightlights in every room.

  • In the bathroom, use non-slip bathmats, a shower chair, and an elevated toilet seat. Install grab bars.

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

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

Ask your healthcare provider about a physical therapy assessment for an assistive walking device. You may eventually need home care aids.

Talk with your healthcare team or lawyer about getting a will and 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 needed.

Follow-up care

Follow up with your healthcare provider as advised. Caregiver support is critical to manage this condition.

For caregivers, don't hesitate to contact the provider if your loved one needs more physical care than you can manage. Also contact the provider if you or other caregivers need emotional support or counseling referrals.

For more information, contact:

When to seek medical advice

Call your loved one's healthcare provider if any of the following occur:

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

  • Frequent falling

  • Refusal to eat or drink

  • Depression, agitation, or anxiety gets worse or is new

  • Loved one's needs are more than you or other caregivers can manage

Call 911

Call 911if any of the following occur:

  • Shortness of breath or rapid breathing

  • Violent behavior

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