Huntington’s Disease: What Is It?

Written by Joanna Thompson, Kate Rope
Medically Reviewed by Poonam Sachdev on April 25, 2025
13 min read

Huntington’s disease (HD) is a hereditary disorder that causes nerve cells in the brain to break down. Over time, this causes motor skills and thinking abilities (cognition) to decline and increases your risk for mood disorders such as depression and anxiety. Huntington’s can begin at any time, from childhood to much later in life. Symptoms most commonly appear when people are in their 30s or 40s. If the condition begins in childhood, adolescence, or anytime before the age of 20, it is called juvenile Huntington’s disease (JHD). JHD makes up about 5%-10% of all Huntington’s disease diagnoses.

There is currently no cure for Huntington’s disease, and symptoms do worsen over time. But many treatments can lessen and help control symptoms. Also, there are many things you can do to live a better life with the condition.

A diagnosis of Huntington’s disease can feel like a lot to handle, but tapping into a support system, such as a social worker, therapist, or support group, can help you deal with it better. With the help of a multidisciplinary (meaning different kinds of providers) health care team, people with Huntington’s can live independently for many years.

In 1993, researchers found the gene that causes Huntington’s. Everyone has the HD gene, but in some families, a mutated (abnormal) copy of the gene gets passed from parent to children. If you have a parent with Huntington's disease, you have a 50% chance of having the gene and developing the disease.

Also:

  • Men and women are equally likely to inherit the abnormal gene.
  • If you don’t have the abnormal gene, you can't get Huntington’s or pass it on to your children.
  • The disease doesn’t skip generations.

If you or members of your family plan to be tested for Huntington’s, it’s a good idea to get professional genetic counseling first. Counselors can help explain what to expect from the test results.

With knowledge about the HD gene, scientists have learned a great deal about how the disease affects the brain. And this discovery may help pave the way for future treatments.

Is Huntington’s disease dominant or recessive?

Humans (and other animals that reproduce sexually) receive two copies of the same gene, one from each parent. A dominant gene is just what it sounds like: When the two genes (one from each parent) come together, the dominant gene is in charge. So, you only have to have one parent with the gene to inherit the trait or condition. The gene that is mutated and causes Huntington’s disease is dominant.

But if your parent has that mutated gene, it is not guaranteed that you will inherit it. Your parent with the HD gene has two copies of that gene. If you inherit the mutated one, that gene will dominate, and you will have the HD gene. But if you inherit the nonmutated one, you will not.

The symptoms of Huntington’s disease affect three general areas: motor skills, cognitive function, and behavior. Clinicians call this the HD symptom triad, “and most patients will experience symptoms in all three,” says Victor Sung, MD, professor of neurology and director of the University of Alabama at Birmingham’s HDSA Huntington’s Disease Center of Excellence.

Symptoms of Huntington’s disease tend to show up in stages.

Early-stage symptoms

Changes may be quite subtle in the early stages, so people often don’t recognize them. Here are some early-stage symptoms in the three areas:

Cognitive function. Early cognitive symptoms may include challenges with multitasking and forgetting things such as appointments. These symptoms will be more noticeable if someone is stressed or under pressure. 

Motor skills. The first motor symptom is chorea — involuntary jerky movements in your face, hands, and feet. 

Behavioral. “The most common early psychiatric symptoms are depression, anxiety, and perseveration,” says Sung. Perseveration is sometimes called “broken record thinking” because you are repeating the same questions, thoughts, or worries over and over again in your head.

Other early symptoms include:

  • Trouble learning new things
  • Difficulty making decisions
  • Memory lapses
  • Mood swings
  • Clumsiness
  • Slow or abnormal eye movements
  • Dystonia (involuntary muscle contractions or abnormal postures)
  • Trouble sleeping (insomnia)
  • Loss of energy and fatigue

Middle-stage symptoms

With time, symptoms begin to interfere more with your day-to-day life. For example, you might start to drop things or fall. Or you may have trouble speaking or swallowing.

Staying organized may be difficult. And emotional changes may put pressure on relationships.

Common middle-stage symptoms include:

  • Uncontrolled twitching movements (chorea)
  • Trouble walking
  • Confusion
  • Memory loss
  • Personality changes
  • Speech changes
  • Decline in thinking abilities
  • Swallowing problems
  • Breathing problems
  • Thoughts of death, dying, or suicide
  • Weight loss
  • Obsessive-compulsive disorder (OCD), bipolar disorder, or mania

Late-stage symptoms

In this stage, people with Huntington’s must depend on others for their care. Walking and speaking are not possible. Most likely, you will still be aware of loved ones around you. Fidgety movements may become severe or lessen over time.

As the condition worsens, your doctors, caregivers, and care team will want to work with you to help maintain the best possible quality of life. This will mean adjusting treatment for new or worsening symptoms, keeping an eye on recent clinical trials, and helping you make decisions about end-of-life care when the time comes.

Juvenile Huntington’s disease symptoms

In children or teens, Huntington’s may progress more quickly and cause symptoms such as: 

  • Stiff or awkward walking
  • Increased clumsiness
  • Changes in speech
  • Trouble paying attention
  • Sudden drop in school performance
  • Behavior problems
  • Tremors
  • Seizures

Early diagnosis will help maintain your quality of life for longer. It may also make you eligible to participate in the many clinical trials. The way to get the earliest diagnosis is to get genetic testing to see if you have the HD gene.

If you see a provider about symptoms you are noticing, they will ask questions about your medical background, give you a physical exam, and likely suggest genetic testing. You will also receive neurological tests to check your:

  • Reflexes
  • Muscle strength
  • Balance
  • Sense of touch
  • Vision
  • Hearing
  • Mood and mental status
  • Memory
  • Reasoning
  • Thinking skills

Only about 10% of patients with a family history of Huntington’s Disease choose to get genetic testing. There can be lots of reasons why, including fears of insurance or employment discrimination. That is why Sung recommends meeting with a genetic counselor skilled in Huntington’s disease who can address your concerns and make the best choice for you.

One reason people often choose not to test is because “they say that there is nothing that can be done about it,” says Sung. In fact, early genetic testing can be helpful in many ways, including:

Participation in clinical trials. “Research for a cure and disease-modifying therapies is picking up,” says Sung. “All of them are looking for patients whose symptoms are super mild, or they don’t have any symptoms yet.” When symptoms are what prompt people to see a provider, they have usually passed the early stage, says Sung.

Better symptom management. “All the symptoms are easier to treat when they are milder,” says Sung. “Very often when we meet patients for the first time, they are very, very symptomatic, and it takes a while to get it under control. It is a lot easier to maintain control.”

Improved quality of life for longer. “If we intervene earlier, you can keep working longer,” says Sung. “It’s not in anyone’s best interest to go on disability at age 45.” The same goes for any daily activity that requires cognitive or motor skills.

Preconception genetic testing

For people who wish to get pregnant and are concerned that they could pass their HD gene to their child, there is a specific option called in vitro fertilization (IVF) with preimplantation genetic testing (PGT). This involves using IVF to fertilize eggs and then allowing them to develop into embryos in the lab. There, they can be tested for the HD gene, making it possible to implant an embryo that is HD-negative.

“Genetic testing is a very personal decision, and we respect everyone’s autonomy,” says Sung.

Research into treatments that may cure Huntington’s disease is going on. But until a cure is discovered, the life expectancy of a person with Huntington’s disease “ranges from 10 to 30 years from diagnosis,” says Erin Furr Stimming, MD, professor and the Director of the HDSA Center of Excellence at UTHealth Houston. “But we are making advances in the diagnosis of HD, so that story is evolving.”

Though there isn’t a cure for Huntington’s, there has been a lot of research in recent years that is very promising. “The HD clinical trial landscape is quite exciting,” says Furr Stimming. “I share the highlights of what we are finding with my patients, so that they leave our clinic recognizing that there is absolutely reason for hope.”

“Quality of life is changing for the better,” agrees Sung. “We always like to say, ‘even though we can’t add years to your life, we can add life to your years.’ It’s corny, but it’s true.” The most important element of treatment is that it be interdisciplinary, which means you have a team of specialists working to support you in many different ways.

The Huntington’s Disease Association has certified 60 Centers of Excellence in 37 states that have teams that consist of providers who specialize in Huntington’s. These teams can include neurologists, social workers, physical therapists, occupational therapists, psychiatrists, neuropsychiatrists, dietitians, genetic counselors, and others. These centers sometimes only see patients once or a few times and then consult your local treatment team.

Huntington’s disease medications

There are medications approved to treat the motor and behavioral (psychological symptoms) of HD, including:

  • Medications called VMAT2 inhibitors that control brain chemicals related to movement, which can lessen chorea (involuntary movements). These include:
    • Deutetrabenazine (Austedo)
    • Tetrabenazine (Xenazine)
    • Valbenazine (Ingrezza)
  • Antipsychotic drugs, which may help control movement symptoms due to their side effects, including:
    • Aripiprazole
    • Fluphenazine
    • Haloperidol
    • Olanzapine (Zyprexa)
  • Antidepressants, mood stabilizing drugs, and antipsychotic medications, which can ease symptoms of mood disorders

Huntington’s disease therapy

Physical, occupational, and speech therapy are critical components of good HD care. 

  • Physical therapists help with gait (how you walk) and balance to strengthen coordination and lower fall risk.
  • Occupational therapists focus on the upper half of your body, helping you with skills, exercises, and equipment to keep doing your daily activities, including your job.
  • Speech therapists help you with speech and swallowing difficulties. 
  • Neuropsychologists can help patients with exercises to maintain mental sharpness and address any cognitive problems they are having.

Nutritional and lifestyle changes

Weight loss and poor nutrition can happen easily when you have Huntington’s disease. That's because poor motor skills and swallowing difficulties can make eating challenging. At the same time, involuntary muscle movement burns more calories. So, dietitians “are focused on weight gain or maintaining weight,” says Sung, “and can help you maintain weight without increasing your risk for other health conditions, such as diabetes.” This involves nutrient-dense foods that are easy for you to eat. Sung recommends the HD Cookbook, “which has a lot of high-calorie recipes safe with swallowing issues.”

Other lifestyle changes

“There is data, mostly from other neurodegenerative diseases, promoting the efficacy of exercise, following a Mediterranean-like diet, and avoiding alcohol, which may impact the rate of the disease’s progression,” says Furr Stimming. “Most of the studies support doing aerobic-like activity for 150 minutes a week. We know capabilities will change over time, so we stress safety.” Working with a physical therapist experienced with Huntington’s can help you follow an exercise routine that works for you.

Other beneficial things to do include learning sleep hygiene to get better sleep, finding ways to manage stress, and psychotherapy, which can teach you ways to manage changes in your emotions and how you think. Strategies such as breaking tasks into simpler steps may help you make these changes a bit easier for you and your family.

There are many ways your family members can help. They can:

  • Serve extra meals and add high-calorie supplements to help you stay at a healthy weight.
  • Limit distractions during meal times.
  • Choose foods that are easier to chew and swallow.
  • Use forks and other utensils made for people with limited motor skills.
  • Use covered cups with straws or drinking spouts.
  • Keep a regular routine.
  • Use phone or computer reminders for tasks.
  • Keep life as calm, simple, and low-stress as possible.
  • Work with the school counselor to make an education plan for children.
  • See friends and maintain social interactions as much as possible.
  • Add wheelchair ramps and elevators to the home if possible.
  • Add safety bars in bathrooms, next to the bed, and on stairs.
  • Use voice-controlled lights and other “smart” home features.
  • Use electronic speech programs or picture charts to aid communication.

If you have a family history of Huntington’s disease and are considering getting a genetic screening, here are a few questions you may want to ask your doctor:

  • How will Huntington’s affect my life?
  • How long would it take for the first symptoms to show up?
  • How long does it take for the disease to get worse?
  • What are my chances of passing it on to my children?
  • How should I prepare for a positive diagnosis?

If you are diagnosed with Huntington’s disease, you might want to ask your doctor the following:

  • What treatment options are best for my current symptoms?
  • Will treatment interfere with any of my medications?
  • Are there any clinical trials I can enroll in?
  • How can I expect my symptoms to change?
  • Should I keep driving?
  • Are there any local support groups I can join?
  • How do I talk to my family about my diagnosis?
  • Who should I ask to join my care team?

If you’ve been diagnosed with Huntington’s disease, your doctor will be the main person in your care team. It’s important to keep a clear, open, and honest line of communication with your primary care doctor to ensure they can get you the very best treatment. They can help you pick a neurologist with experience in treating people with Huntington’s disease. 

You may also want to add a social worker to your care team. They can help with insurance, medical bills, and Social Security benefits.

Friends and family can be vital sources of support as well. It may help you deal with your feelings to talk to a trusted family member or friend. This can help them better understand what you need as the condition worsens. Along with these resources, you can access several support networks for Huntington’s disease online or in person at a local chapter. The Huntington’s Disease Society of America, for example, has 50 chapters and affiliates across the country and offers a comprehensive directory of support, including youth services, caregiver support, support groups for patients and caregivers, and social services.

If you are a caregiver for someone with Huntington’s, organizations such as the Family Caregiver Alliance can offer support resources.

Caring for your emotional and psychological needs is as important as managing the physical symptoms of Huntington’s disease. About 40% of people with the condition have feelings of depression at some point after their diagnosis. Many people living with Huntington’s also have other mental health symptoms, including mania, OCD, and psychosis. Mental health care should be part of your treatment at every stage after your diagnosis. 

You may want to ensure that you’re in a comfortable and supportive environment as the condition gets worse. This can include spending more time with loved ones, talking with a therapist or counselor, and doing things that interest you, such as reading, needlework, or games. These things also help your mind stay sharp for as long as possible.

Medication and light exercise may also help treat feelings of depression and anxiety.

There is also some evidence that electroconvulsive therapy (ECT) may help ease some of the mental health issues that come with Huntington’s disease. But studies are limited, and you should not undertake ECT without discussing it with your neurologist, primary care doctor, and the rest of your medical team.

Researchers are studying new therapies for Huntington’s disease, and there are clinical trials underway looking for a cure. Early diagnosis can help control symptoms and maintain your quality of life for longer. It's important to find a team that specializes in Huntington’s and includes different kinds of providers who can support you in several ways. Genetic testing can help with early diagnosis and choices about growing your family. It’s important to work with a genetic counselor experienced in HD to help you make the best choices for your situation. There is good support available for anyone living with, or caring for, someone with Huntington’s.

What is the first sign of Huntington’s disease? 

There can be different early signs that affect how you think, move, or feel emotionally. Some of these include chorea (jerky movements of your face, hands, or feet), difficulty multitasking, memory issues, depression, anxiety, and repetitive thoughts or worries.

Is Huntington’s disease fatal? 

Yes, there is currently no cure for Huntington’s Disease, but there is a lot of research — and some progress — happening to find one.

What is Huntington’s chorea?

Jerky movements in your face, hands, or feet are referred to as Huntington’s chorea.

Is there a cure for Huntington’s disease? 

There is currently no cure, but researchers are looking for ways to modify or change the HD gene.