Huntington’s disease life expectancy and influencing factors

There is no cure for Huntington’s disease. Life expectancy depends on a few factors, including the age at which 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 is a fifty% possibility that your child will have it too. On 30,000 people in the United States have HD, and another 200,000 are at risk of having it.

Once someone has an HD diagnosis, they can use support through advocacy organizations as well as involvement in the HD community.

Researchers often measure HD life expectancy by the number of years after the onset of symptoms. This can be as young as 5 years or over 25 for adult-onset HD. The median, or middle range, is 15 to 18 years after a person begins to experience symptoms.

Many people with HD can live for many years before they start to experience symptoms. The average age of onset of symptoms is 45 years. However, about 25% of those affected do not experience the onset of Huntington’s disease until after age 50.

It is possible to receive a diagnosis of HD before symptoms begin. The connections in the brain and the volume of the brain can change years before someone has symptoms of HD. At this early stage, the changes are visible on an MRI, even if they don’t affect the body, behavior, or thinking.

The 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 an HD diagnosis is received, life expectancy is based on the onset of symptoms.

Juvenile Huntington’s disease has a earlier onset of symptoms than the adult form of the condition. Juvenile HD begins in a person’s childhood or adolescence. The condition also has additional symptoms that do not usually occur in the adult form, such as:

The average life expectancy for juvenile HD is about 10 to 15 years after symptoms start.

According to the Huntington’s Disease Society of America (HDSA), people with HD often have a lower average body weight than those without HD. Maintaining weight can help manage the condition, so it is important for people with HD to eat well, and to make eating a source of pleasure.

Exercise and physical therapy are other important parts of living well with HD. In later stages of HD, people may develop balance problems that increase the risk of falls. Many people also experience muscle shortening that reduces joint mobility. Active range of motion exercises in all stages of HD can help maintain strength.

Often the cause of death of a person with HD is secondary to the disease itself. Someone can get a serious infection like pneumonia. They can also sustain a serious injury due to a fall.

A analysis 2018 He cited previous 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 the records of people with HD in Norway between 1986 and 2015. The Norwegian Causes of Death Register (NCDR) listed Huntington’s disease as the reason for death among 73.5% of people with the condition. For the remaining 26.5%, the causes were, in order of prevalence:

  • cardiovascular diseases
  • cancer
  • respiratory diseases
  • injury or poisoning
  • suicide

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 Huntington’s disease.

Knowing that you or someone you know has HD can change many aspects of your life. There are places you can turn for help, whether you are a caregiver, a friend, or living with your own HD diagnosis.

treatment options

There is no cure for Huntington’s disease, but there are some treatment options to control symptoms. These may include:

  • medications to control movement symptoms such as chorea, dystonia, and myoclonus
  • environmental changes, therapy, and medications to control behavioral and psychiatric symptoms such as aggression, depression, apathy, and irritability
  • supportive care, including dietary interventions and nursing care
  • counseling and emotional support

Support groups and organizations

Connecting with others experiencing HD can help make the journey easier. It can be a valuable source of emotional support and information sharing. Advocacy groups include:

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 “grey 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 role of caretaker 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 many years without symptoms. After the onset of symptoms, people live between 15 and 18 years, but can live more than 25 years. People with the juvenile form of HD usually live 10 to 15 years after symptoms begin.

There are various supports available to people with HD and their loved ones, including advocacy organizations.

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