HonestlyHD-logo-desktop@3xHD Overview HonestlyHD-logo-desktop@3xHD Overview

Huntington’s disease overview

Huntington’s disease (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.1,2

Symptoms of Huntington’s disease include involuntary body movements called chorea, personality changes, and memory problems.

There is no cure for HD. However, many symptoms can be managed, helping to ease some of the challenges of HD. Early treatment of chorea, for example, can help you stay independent longer.1

WHERE ARE THESE INVOLUNTARY MOVEMENTS?

Fast Facts about HD

More than 30,000 Americans are living with HD.¹

Everyone has two huntington (HTT) genes, one from each parent.

Huntington's disease develops when one of those genes carries the mutation³

Huntington's disease develops when one of those genes carries the mutation³

In some families, appearance of symptoms happens earlier and earlier with each generation.⁴

The symptoms of HD usually appear between the ages of 30-50.¹



The genetic mutation that causes HD is inherited in an autosomal dominant pattern, which means a child of a parent with the HD mutation has a 50% chance of inheriting it.5 The only way to know for sure if a person has the mutated gene that causes HD is through a genetic test.6

There are 2 types of tests available to find
out if you have the mutated gene.7



  • 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 doctor suspects it might be HD.

The decision to get tested
for HD is very personal.

Genetic counselors and other care specialists can help you and your family work through the many factors to be considered before making the decision to get tested.

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

What Huntington’s disease looks like

Although symptoms of HD vary from person to person, they generally fall into 3 categories6:

Motor

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

Thinking

Forgetfulness, difficulty with concentration and organization of thoughts

Emotional

Depression, mood swings, lack of inhibition, and irritability

People caring for loved ones with HD rated chorea as the most impactful symptom of HD. Learn more about chorea, what it looks like, and how the involuntary movements may impact daily life.8

SEE THE IMPACT OF HD CHOREA

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.1

Early stage5,9-11

0-13 years after
symptom onset		 Middle stage5,9-11

5-16 years after
symptom onset		 Late stage5,9-11

9-26 years after
symptom onset
changes in behavior such as lack of inhibition weight loss an inability to walk or speak chewing and swallowing issues
clumsiness, which could be an early sign of chorea speech difficulties a growing dependency on others  
feelings of anxiety, mood changes, irritability involuntary movements caused by chorea sleep difficulties worsening of motor control/severe chorea

HD chorea can make everyday activities difficult.

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

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.1

Early stage5,9-11

0-13 years after
symptom onset

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

Middle stage5,9-11

5-16 years after
symptom onset

  • weight loss
  • speech difficulties
  • involuntary movements caused by chorea

Late stage5,9-11

9-26 years after
symptom onset

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

HD chorea can make everyday activities difficult.

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
MAKING DECISIONS ABOUT HD CHOREA

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 doctor 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.

Find out more about HD and HD chorea

Discover the most frequently asked questions

SEE FAQs

Read the inspiring stories of care partners.

SEE REAL STORIES

Register for HD chorea information

SIGN UP

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. Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. New York, NY: Huntington’s Disease Society of America; 2011. Accessed January 27, 2022. http://hdsa.org/wp-content/uploads/2015/03/PhysiciansGuide_3rd-Edition.pdf 3. Is Huntington's disease more common than we thought? Press release. American Academy of Neurology. June 22, 2016. Accessed January 28, 2022. https://www.aan.com/PressRoom/Home/PressRelease/1475 4. Walker FO. Huntington's disease. Lancet. 2007;369(9557):218-228. 5. Huntington disease. Genetic and Rare Diseases Information Center – an NCATS Program. Accessed January 28, 2022. https://rarediseases.info.nih.gov/diseases/6677/huntington-disease 6. 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 7. Huntington's disease. Mayo Clinic. April 14, 2020. Accessed January 28, 2022. https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/diagnosis-treatment/drc-20356122 8. Simpson JA, Lovecky D, Kogan J, Vetter LA, Yohrling GJ. Survey of the Huntington’s disease patient and caregiver community reveals most impactful symptoms and treatment needs. J Huntingtons Dis. 2016;5(4):395-403. 9. Burgess JC, Davis B, Fogarty E, et al. Caregiver Guide for Mid to Late Stage Huntington's Disease: For Long-Term Care Facilities and In-Home Care Agencies. New York, NY: Huntington's Disease Society of America; 2014. Accessed January 28, 2022. http://hdsa.org/wp-content/uploads/2015/04/CaregiverGuide_Mid_Late_StageHD.pdf 10. Stages of HD progression. UC San Diego Department of Neurosciences. Accessed February 15, 2022. https://neurosciences.ucsd.edu/centers-programs/huntingtons-disease/education/stages-of-progression.html 11. Learn about Huntington's disease: Stages of HD. HD Reach. Accessed February 15, 2022. https://www.hdreach.org/archive/learn/stages.html