What to Know About Huntington’s Disease (HD)

HD is a 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. 01 The condition can cause emotional changes like depression or irritability, cognitive changes like memory or concentration problems, and motor changes like involuntary body movements called chorea. 01

More than 30,000 Americans are living with HD. 01
90% of peoople with Huntigton's disease will develop HD chorea.02
99% of people with chorea require assistance with some element of daily self-care. 03

HD Chorea is a movement disorder related to the release of dopamine in the brain. An abnormal increase in dopamine can cause unintentional movements throughout the body including: 04 05

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Hands and Face

Limbs and Torso

Speech and Mobility

What to keep in mind if you think you have HD

Living independently may require occasional assistance from family and friends in the early stages of HD. As the disease progresses, people with HD often need long-term care. Plan ahead so you can make decisions about long-term care before it becomes urgent.

When talking to your healthcare provider, it’s important to share how HD is impacting you physically, socially and emotionally. There are tools available on www.honestlyhd.com to help guide your conversations.

References

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    Huntington's disease information page. National Institute of Neurological Disorders and Stroke. Accessed January 27, 2022. Huntington's Disease | National Institute of Neurological Disorders and Stroke

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    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.

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    Claassen DO, DeCourcy J, Mellor J, Johnston C, Iyer RG. Impact of chorea on self-care activity, employment, and health-care resource use in patients with Huntington's disease. JHEOR. 2021;8(1):99-105.

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    Shannon K, Lovecky D, eds. Huntington's Disease: A Family Guide. New York, NY. Huntington's Disease Society of America; 2016. Accessed January 28, 2022. HDSA_FamilyGuide.pdf

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    Cepeda C, Murphy K, Parent M, Levine MS. The role of dopamine in Huntington's disease. Prog Brain Res. 2014;211:235-254.

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    Huntington disease. Genetic and Rare Diseases Information Center – an NCATS Program. Accessed January 28, 2022Huntington's disease. Mayo Clinic. April 14, 2020. Accessed January 28, 2022. Huntington disease | About the Disease | GARD

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    Huntington's disease. Mayo Clinic. April 14, 2020. Accessed January 28, 2022. Huntington's disease - Diagnosis and treatment - Mayo Clinic

NPS-US-NP-01855 March 2025