10 Surprising Facts About Huntington's Disease

Doctor William C Lloyd Healthgrades Medical Reviewer
Medically Reviewed By William C. Lloyd III, MD, FACS
Written By Jennifer L.W. Fink, RN, BSN on August 7, 2021
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    Huntington’s Disease Facts That May Surprise You
    Huntington’s disease was named after Dr. George Huntington; his 1872 paper described the symptoms and impact of the disease on affected families. Until the 1960s, the disease was often called Huntington’s chorea, based on the Greek word describing a dance. Symptoms include gradual loss of the ability to control movements; eventually, people with Huntington’s are unable to walk or move independently and may lose the ability to swallow and speak. Learn more Huntington’s disease facts that may surprise you, including what researchers know about Huntington’s disease genetics, how life expectancy is affected by Huntington’s, and treatments to improve independent living with the condition.
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    1. More than 30,000 Americans have Huntington’s disease.
    According to the National Institute of Neurological Disorders and Stroke, more than 30,000 Americans— approximately 0.009% of the population—have symptomatic Huntington’s disease. Another 200,000 or so Americans are at risk for the disease: They may have the gene that causes Huntington’s but do not yet exhibit any symptoms. Huntington’s disease affects males and females throughout the world and does not seem to be more prevalent among one gender or ethnic group.
  • artist's concept of DNA molecule with individual chemical structures in the background
    2. A defective HTT gene causes Huntington’s disease.
    Researchers now know that Huntington’s is caused by a mutation of a particular gene—the HTT, or huntingtin gene. If neither of your biological parents have Huntington’s disease, you cannot get it. However, if one of your parents has Huntington’s, you won’t necessarily develop the disease. Each child of a parent with Huntington’s has a 50-50 chance of inheriting the mutated gene and eventually developing the condition. So, if one of your parents has Huntington’s disease, you have a 50% chance of eventually experiencing symptoms. Your siblings face the same odds; it’s possible for some siblings to inherit the condition while others do not.
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    3. Symptoms don’t usually appear until middle age.
    Babies born with the mutated gene appear completely normal at birth. In fact, symptoms of Huntington’s disease don’t usually appear until people are in their 30s or 40s. Early symptoms of the disease may be subtle: occasional clumsiness or spasmodic involuntary movements, mood swings, restlessness, impulsiveness or irritability. People may begin to struggle with routine physical activities, including driving and writing by hand. Doctors diagnose Huntington’s disease based on symptoms, family history and neurologic and genetic tests.
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    4. Juvenile Huntington disease can affect people under age 20.
    Rarely, symptoms of Huntington’s disease appear in children or teenagers under the age of 20. According to the Genetic and Rare Diseases Information Center, this early-onset form of the disease is called juvenile Huntington disease (JHD) and accounts for 5 to 10% of all Huntington’s disease cases. Symptoms of JHD include muscle rigidity, slowness, rapid involuntary muscle jerks, seizures, and difficulty at school. JHD typically progresses more quickly than later-onset Huntington’s. Most people with JHD die within 10 to 15 years of onset of symptoms.
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    5. Genetic testing can reveal whether you’re at risk for Huntington’s.
    If Huntington’s disease runs in your family, a simple genetic test performed on a blood sample can tell you if you have the mutated HTT gene and will eventually develop the disease. Unfortunately, you cannot delay onset of the disease. To date, it’s impossible to repair the genetic mutation, and there aren’t any medications you can take to decrease your odds of developing Huntington’s. The decision to undergo genetic testing is intensely personal. A genetic counselor can help you weigh the pros and cons.
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    6. Pre-pregnancy planning can help at-risk couples.
    If someone in your family has Huntington’s, you may be understandably concerned about the risk of passing the disease to any of your biological children. Remember, if one of your parents has Huntington’s, you have a 50-50 chance of having the mutation and your children will each have a 50-50 chance of inheriting it. If you have the mutation that leads to Huntington’s, science can help you have a child without the mutation. Preimplantation genetic testing can be used alongside in vitro fertilization (IVF) to ensure that only mutation-free fertilized eggs are implanted into the womb.
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    7. Huntington’s disease is progressive.
    The first symptoms of Huntington’s may be mild or sporadic, but as time goes on, symptoms will become more severe. At first, people with Huntington’s can manage their activities of daily living, including working and parenting. As the disease progresses, people lose the ability to independently manage their affairs; they may need assistance eating, dressing, bathing and managing their money and household chores. In the end stages of Huntington’s, a person may be completely bedridden and dependent on others. Most people live 10 to 20 years after diagnosis, according to the Huntington’s Disease Society of America.
  • HIspanic man in his 50s reaches for one of his medicine bottles while sitting at table in front of laptop computer
    8. Medical treatment focuses on symptom control.
    Unfortunately, there is no cure for Huntington’s disease. Scientists have not yet figured out a way to halt or reverse the progression of the disease. However, physicians can use medication to control some of the symptoms. Medications commonly prescribed to treat Huntington’s include tetrabenazine, which is FDA-approved to suppress the involuntary movements associated with Huntington’s. Other medications include clonazepam and amantadine. Physicians may also prescribe antidepressant, antipsychotic and mood-stabilizing medicines to treat cognitive symptoms. Physical, occupational and speech therapy can help people with Huntington’s maintain their strength and independence as long as possible.
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    9. Huntington’s can affect your mental health.
    Approximately 40% of people with Huntington’s develop symptoms of major depression. Huntington’s affects a person’s ability to reason and may cause impulsiveness. Don’t ignore symptoms of depression. Counseling, support groups, and prescription medicine, such as antidepressant medications, can help alleviate symptoms, improve quality of life, and decrease suicide risk.
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    10. Support is essential.
    Because Huntington’s eventually robs a person of the ability to make their own decisions, it is essential to discuss desired medical care while the affected person is still cognizant. Work with a lawyer to draw up advanced directives, including a living will and healthcare power of attorney; you’ll likely also need a general power of attorney. The Huntington’s Disease Society of America provides support groups for affected family members. Your local and state health and social service agencies may also be able to connect you with assistance, including meal delivery, in-home caregivers, and respite care.

10 Surprising Facts About Huntington's Disease
  1. Huntington’s Disease. MedlinePlus, U.S. National Library of Medicine. https://medlineplus.gov/huntingtonsdisease.html
  2. Huntington’s Disease Information Page. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/All-Disorders/Huntingtons-Disease-Information-Page
  3. Huntington’s Disease. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117
  4. Juvenile Huntington Disease. Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/diseases/10510/juvenile-huntington-disease
  5. Overview of Huntington’s Disease. Huntington’s Disease Society of America. https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/
  6. Huntington’s Disease: Hope Through Research. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Huntingtons-Disease-Hope-Through
  7. Having Children. Huntington’s Disease Youth Organization. https://en.hdyo.org/eve/articles/45

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Last Review Date: 2021 Aug 7
THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Never ignore professional medical advice in seeking treatment because of something you have read on the site. If you think you may have a medical emergency, immediately call your doctor or dial 911.