There is no cure for Huntington’s disease. Life expectancy depends on a few factors, but the median survival period is estimated at 15-18 years after symptoms begin.
Huntington’s disease (HD) is a progressive condition that causes involuntary muscle movements, cognitive decline, and behavioral changes.
HD is inherited. If a person has HD, there’s a 50% chance that their child will also have it. In the United States, about 41,000 people are living with symptomatic Huntington’s disease, and more than 200,000 others are at risk of inheriting it, according to the Huntington’s Disease Society of America (HDSA).
Once someone has an HD diagnosis, they can make use of support through advocacy organizations as well as participation in the HD community.
Researchers typically measure life expectancy for HD by the number of years after symptom onset. This can be as few as 5 years or more than 25 for adult-onset HD. The median, or middle range, is
At what age does Huntington’s appear?
Many people with HD can live for many years before they begin to experience symptoms. The average age of symptom onset is 45 years. However, about 25% of those affected don’t experience the onset of Huntington’s disease until after the age of 50.
It’s possible to receive a diagnosis of HD before symptoms begin. Connections in the brain and brain volume can
Diagnosis of HD is usually made on the basis of clinical signs and symptoms and a known parent with Huntington’s disease. The gold standard of diagnosis is genetic testing.
Regardless of when one receives an HD diagnosis, the life expectancy is based on symptom onset.
Juvenile Huntington’s disease has an earlier symptom onset than the adult form of the condition. Juvenile HD starts in a person’s childhood or teen years. The condition also has additional symptoms that don’t often happen in the adult form, such as:
- slurred speech
The average life expectancy for juvenile HD is about 10-15 years after symptoms start.
According to the HDSA, people with HD often have a lower average body weight than those without HD. Keeping weight on may help to manage the condition, so it’s important that people with HD eat well, with eating being a source of enjoyment.
Exercise and physical therapy are other important parts of living well with HD. In the later stages of HD, people may develop balance problems that increase fall risk. Many people also experience muscle shortening that reduces joint mobility. Active range of motion exercises in all stages of HD can help to maintain strength.
Often, the cause of death of someone with HD is secondary to the condition itself. Someone may get a serious infection like pneumonia. They might also experience a serious injury due to a fall.
A 2018 analysis cited earlier research that found pneumonia and cardiovascular disease to be the most common causes of death among people with HD. The study also did an analysis of records of people with HD in Norway between 1986 and 2015.
According to the study, the Norwegian Cause of Death Registry (NCDR) listed Huntington’s disease as the reason for death among
- cardiovascular diseases
- respiratory diseases
- injuries or poisoning
The study noted that these causes were also similar to the causes of death, in the same order of prevalence, for the general population — including those without HD.
Learning you or someone you know has HD can change many aspects of your life. There are places you can turn to for help, whether you’re a caregiver, friend, or living with your own HD diagnosis.
Is Huntington’s disease a terminal illness?
- medications to manage movement symptoms like chorea, dystonia, and myoclonus
- environmental changes, therapy, and medications to manage behavioral and psychiatric symptoms like aggression, depression, apathy, and irritability
- supportive care, including dietary interventions and nursing care
- counseling and emotional support
Support groups and organizations
Connecting with others who experience HD can help make the journey easier. It can be a valuable source of emotional support and information exchange. Advocacy groups include:
- Huntington’s Disease Association (U.K.)
- Huntington Society of Canada
- Huntington’s Disease Society of America
Each of these groups has links to support groups and volunteer opportunities to get involved with the HD community.
The Huntington’s Disease Association (HDA) also has resources for people who have tested negative for HD or have a “gray area” test result. People with this experience often have mixed feelings, such as guilt that others have a positive result or guilt for not wanting a caregiver role for affected siblings.
HDA has a private Facebook group for people who have tested negative.
Huntington’s disease is an inherited condition that causes involuntary muscle movements and changes in cognition and behavior.
Many people live for many years without symptoms. After symptom onset, people live about 15 to 18 years but may live longer than 25 years. Those with the juvenile form of HD typically live for 10 to 15 years after symptoms start.
There are a number of supports available for people with HD and their loved ones, including advocacy organizations.