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Living with Huntington disease

Information, shared experiences and research connections for people living with Huntington disease and those who support them.

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Understanding Huntington disease

Huntington disease is an inherited brain condition that causes uncontrolled movements, emotional problems and loss of thinking ability.

It usually begins in a person's 30s or 40s and slowly gets worse over time; a less common juvenile form starts in childhood or the teen years.

Signs & symptoms

Early signs can be subtle and often include changes in mood as well as movement.

  • Uncontrolled jerking or twitching movements (chorea)
  • Irritability, depression or anxiety
  • Problems with coordination and balance
  • Trouble with memory and thinking
  • Unclear speech
  • Trouble swallowing

Tell your care team about new or changing symptoms.

Diagnosis

  1. Neurological exam

    A neurologist checks movement, balance, reflexes, memory, thinking and mood, and asks about family history.

  2. Genetic testing

    A blood test that counts CAG repeats in the HTT gene is the most definitive way to confirm HD.

  3. Support and other tests

    Genetic counselors can help you and your family understand testing, and brain scans or lab tests may also be used.

Care & treatment

Current options
There is no treatment yet that can stop or reverse HD, but symptoms can be managed.
Treatment
Medicines can help with chorea and with depression, anxiety and other mental health symptoms, with careful watching for side effects.
Your team
A care team may include neurologists, mental health professionals, genetic counselors and speech-language therapists.

Discuss benefits, risks and follow-up with your care team.

Everyday life

Needs change over time, so planning ahead helps.

  • Keep notes on changes in movement, mood and thinking to share at visits.
  • List your medicines and any side effects, such as tiredness or trouble concentrating.
  • Talk with your care team early about work, driving and daily-living support.
Bring these questions to your next doctor visit
Should I or my family members have genetic testing, and what support comes with it?
Which of my symptoms can treatment help most right now?
What services can help with work, driving and daily care as things change?
Sources: NIH GARD — Huntington disease · NINDS — Huntington's diseasePage drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

You are more than your diagnosis

Perspectives from people navigating life with Huntington disease.

Explore the Huntington disease blog
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The Invisible Job: What Caregiving for a Rare Disease Really Looks Like

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Embrace the Ask: How to Seek The Support You Need

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Explore research for Huntington disease

Explore actively recruiting Huntington disease studies with HealthSpark.

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Find actively recruiting studies for Huntington disease with HealthSpark. Share your city to explore research near you.

  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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