Frequently asked questions about Huntington’s disease (HD) and chorea



Frequently asked questions about Huntington’s disease (HD) and chorea


What is Huntington’s disease and what happens when you have it?

HD is hereditary brain disease caused by a mutation in one gene in a person’s DNA. This mutation affects an area deep in the brain that helps control movement, mood, and thinking.1

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What are the main signs and symptoms of Huntington's disease?

HD can cause emotional changes like depression or irritability, cognitive changes like memory or concentration problems, and motor changes like involuntary body movements called chorea.2

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What are the first symptoms of Huntington's disease?

HD affects everyone differently. Cognitive and emotional symptoms may appear before involuntary movements but since chorea is the most visible symptom, it is often recognized as one of the first signs of HD.3,4

Find out about HD Chorea

At what age do symptoms of Huntington's disease start?

Everyone is different, but symptoms usually start to appear between the ages of 30-50.1

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What is Huntington’s disease chorea?

Chorea is a movement disorder related to the release of dopamine in the brain. An abnormal increase in dopamine—a brain chemical that helps control movement—can cause unintentional movements throughout the body, like twitching and jerking.5

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Are there different types of chorea?

Not really. Chorea is defined as uncontrollable body movements. It typically appears as unintentional movements such as twitching or jerking, fidgeting, or speech problems.5

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Is there a cure for Huntington’s Disease?

There is no cure for HD and symptoms progressively worsen over time, but there are treatments available to manage the symptoms.6

Learn about managing symptoms of HD

What organizations help with Huntington's disease?

The Huntington’s Disease Society of America certifies clinics as Centers of Excellence if they meet their standards for compiling comprehensive care teams. Discover Centers of Excellence and additional resources to help support you through your journey with HD.

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Does chorea go away?

There is no cure for chorea associated with HD, but medicine is available to help manage the involuntary movements. Find out about a treatment that can help.1

Discover a treatment for HD chorea

What kinds of support groups are there?

There are many support channels for people with HD, their care partners, and their families. They range from finding treatment and testing, to education and resources of all types.

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Is there a difference between Huntington's disease and Huntington's chorea?

Chorea is one symptom of Huntington’s disease. Often, when a person with HD has chorea it’s called Huntington’s chorea.

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about HD chorea

What is the life expectancy of a person with Huntington's disease?

HD progresses differently in everyone, so life expectancy depends upon when symptoms first appear and how quickly the disease progresses. On average, people with HD live 10-30 years or more from the time they were diagnosed.1

See the stages of HD

References: 1. Huntington's disease information page. National Institute of Neurological Disorders and Stroke. Accessed January 27, 2022. https://www.ninds.nih.gov/Disorders/All-Disorders/Huntingtons-Disease-Information-Page 2. Tarapata K, Lovecky D, eds. Nutrition and Huntington's Disease: A Guide for Families. New York, NY: Huntington's Disease Society of America; 2010. Accessed January 28, 2022. https://hdsa.org/wp-content/uploads/2015/04/Nutrition-and-HD.pdf 3. Huntington disease. Genetic and Rare Diseases Information Center – an NCATS Program. Accessed January 28, 2022. https://rarediseases.info.nih.gov/diseases/6677/huntington-disease 4. Cepeda C, Murphy K, Parent M, Levine MS. The role of dopamine in Huntington's disease. Prog Brain Res. 2014;211:235-254. doi:10.1016/B978-0-444-63425-2.00010-6 5. Thorley EM, Iyer RG, Wicks P, et al. Understanding how chorea affects health-related quality of life in Huntington disease: an online survey of patients and caregivers in the United States. Patient. 2018;11(5):547-559. doi:10.1007/s40271-018-0312-x