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What is Huntington’s disease (HD)?

HD is an inherited disorder in which nerve cells in the brain break down and are irreversibly damaged. HD is caused by a mutation in one of the thousands of genes that make up a person’s DNA. This mutation affects an area deep in the
brain that helps control movement, mood, and thinking.

Huntington’s disease symptoms include uncontrollable body movements called chorea, personality changes, and memory problems.

The first signs of HD typically appear in adulthood, but symptoms may emerge sooner in some.

While there is no cure for Huntington’s disease, treatments are available to manage certain symptoms. Identifying and planning ahead for chorea, for example, can help you stay independent longer.

WHAT DO HD CHOREA MOVEMENTS LOOK LIKE?

Fast Facts
about HD

~41,000
Americans are
living with HD.

Everyone has two huntingtin
(HTT) genes, one from each
parent. HD develops when
one of those genes carries
the mutation.

In some families,
appearance of
symptoms happens
earlier and earlier with
each generation.

90% of people
with HD will
develop chorea.

The symptoms of
HD usually
appear between
the ages
of 30-50.

Diagnosing HD

50% of children whose parents have HD will inherit the disease. The only way to know for sure if a person has the mutated gene that causes HD is through a genetic test.

There are 2 types of tests available to find
out if you have the mutated gene.

  • DNA icon

    Predictive testing can be done before symptoms appear and is usually recommended if one or both parents have HD.

  • DNA icon

    Confirmatory testing is done if you already have symptoms and your healthcare provider suspects it might be HD.

Question mark icon

The decision to get tested
for HD is very personal.

Care specialists like genetic counselors can help you and your loved ones work through any concerns before making the decision to get tested.

For many, receiving a positive test result can be shocking and
disorienting. Your healthcare provider and an experienced care team can help you and your family navigate the uncertainty of living with HD.

What are the first signs of Huntington’s disease?

The early symptoms of HD are unique for each person, but they generally fall into 3 categories:

Walking icon
Motor

Uncontrollable movements
(chorea) and balance issues, which can affect walking and other daily tasks

Brain icon
Thinking

Forgetfulness, difficulty with concentration and organization of thoughts

Emotion icon
Emotional

Depression, mood swings, lack of inhibition, and irritability

People caring for loved ones with HD rated chorea as the most impactful symptom. Learn more about chorea, what it looks like, and how the uncontrollable movements may impact daily life.

see the impact of
hd chorea

When do Huntington’s disease symptoms appear?

People with HD most often begin showing signs between 30-50 years of age. Symptoms can develop sooner, sometimes even before age 20. If symptoms appear before 20 years of age, this is called juvenile, or early-onset HD.

While both adult and juvenile HD are genetic, juvenile HD is most likely inherited directly from a parent who may have developed symptoms later in life.

In general, the earlier symptoms appear in people with HD, the faster the disease may progress.

LEARN HOW TO IDENTIFY HD CHOREA SYMPTOMS

The stages of Huntington’s disease

Although the rate of progression is different for everyone, the time span between early- to late-stage HD is approximately 10–30 years.

Early stage

0-13 years after
symptom onset

  • clumsiness, which could be an early sign of chorea
  • changes in behavior, such as lack of inhibition
  • feelings of anxiety, mood changes, irritability

Middle stage

5-16 years after
symptom onset

  • uncontrollable chorea movements
  • weight loss
  • speech difficulties

Late stage

9-26 years after
symptom onset

  • an inability to walk or speak
  • a growing dependency on others
  • sleep difficulties
  • worsening of motor control/severe chorea
  • chewing and swallowing issues

HD chorea makes everyday tasks a challenge.

Deciding how to deal with the daily challenges of chorea can help you or your loved one protect independence for as long as possible.

making decisions
about hd chorea
Huntington’s disease (HD) symptoms affect all aspects of life. You will likely have a comprehensive, professional support team to help.

Caring for all aspects of you and your HD

Symptoms of HD, including chorea, may affect a person emotionally, functionally, and physically. That’s why your healthcare provider will likely recommend an entire care team of specialists to treat HD holistically, instead of symptom by symptom.

A comprehensive care team may consist of specialists like:

  • Neurologists
  • Psychiatrists
  • Social workers
  • Mental health
    counselors
  • Nurse specialists
  • Genetic counselors
  • Dietitians
  • Physical therapists
  • Neuropsychologists
  • Occupational therapists
  • Psychologists
  • Speech and language therapists

There are clinics that house comprehensive HD teams all in one place. The Huntington’s Disease Society of America (HDSA) certifies clinics that meet their rigorous standards for comprehensive care and deems them Centers of Excellence.

Visit their site to find out more and locate one near you.

Huntington's Disease (HD) Society of America logo. Huntington's Disease Society of America logo.
Find out more about HD and HD chorea

Discover the most
frequently asked questions

SEE FAQS

Read the inspiring stories of real people living with HD and real
care partners

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