Patient information from BMJ

Huntington’s disease

Last published:Jun 24, 2022

Huntington disease is an inherited condition that affects the nervous system. It causes problems with movement, memory, and concentration.

There are treatments that can help with some of the symptoms, but there is no cure. Huntington disease slowly gets worse over a number of years and eventually leads to death.

If you are affected by Huntington disease, you can use our information to talk with your doctor about the treatments available and planning for the future.

What is Huntington disease?

If you have Huntington disease, a part of your brain stops working properly. This affects the nervous system, causing problems with movement, memory, speech, and concentration.

Huntington disease is an inherited condition. About half of people with a parent with Huntington disease will go on to develop it. It is not infectious. You can’t catch Huntington disease from someone else or pass it on like a virus or a bacterial infection. 

Symptoms can start at any age, but it’s usually between the ages of 30 and 50.

There is no cure for Huntington disease. The symptoms slowly get worse over time, and most people die from it about 20 years after they first have symptoms.

Men and women are equally likely to get it. But it’s much more common in people of white, northern European descent than in people of most other ethnic groups.

What are the symptoms?

The symptoms of Huntington disease affect people in three main ways. These are:

• Thinking and memory: the medical term is cognitive impairment

• Changes in behavior, and

• Problems with movement. Doctors call these motor symptoms.

Cognitive impairment symptoms

Symptoms that affect thinking and memory are often some of the earliest symptoms of Huntington disease. They include:

• Problems with concentration. For example, you might notice that your work is suffering

• Anxiety about work, and not caring about your work as much as you used to

• Needing help from family or friends with things that you used to be in charge of, and

• Making poor decisions when you need to concentrate. For example, you might be more likely to have a car accident.

Behavior symptoms

Huntington disease can affect someone’s behavior in many ways, including:

• Being irritable

• Being impulsive. For example, you might make quick decisions without thinking much about them

• Not paying attention to how you look, or to personal hygiene

• Personality changes. For example, someone’s friends and relatives might notice changes in their habits and interests.

Problems with movement (motor symptoms)

Huntington disease affects the nerves and the muscles that they control. This can lead to symptoms including:

• Twitching and jerking movements that you can’t control. Doctors call this chorea

• Seeming restless and unable to stop moving

• Problems with coordination

• Moving slowly. For example, walking more slowly than you used to, and stiff muscles that don’t relax.

People with Huntington disease often develop depression. It’s not clear whether this is a symptom of the changes in the brain that Huntington disease causes, or whether it’s a reaction to having the condition. 

If you see your doctor with symptoms similar to those of Huntington disease, your doctor will ask you if you know whether either of your parents had the condition.

It might be possible to have genetic testing to find out if you have inherited Huntington disease. But other tests and scans are not always needed, especially at first. 

Being diagnosed with Huntington disease can be hard to deal with. You might want time to think about it before making any treatment decisions.

And you might want to think about having counseling to help you cope. Your doctor might be able to help in arranging this.

What treatments are available?

Unfortunately there is no cure for Huntington disease. And, while there are treatments that can help with some of the symptoms, there are none for the condition itself.

But this is likely to change as we find out more about the condition. For example, there is currently a lot of research into how to stop the Huntington gene from causing problems. These treatments are some years away, but they should offer hope for the future.

The medications currently used to help people with Huntington disease can have side effects in some people. Your doctor should talk with you about them, and about what to do if they happen.

For example, you might be able to switch to a different medication or dose. But don’t just put up with them.

Depression

Depression and anxiety are common in people with Huntington disease. But treatments such as medications and counseling can help. 

Counseling for depression linked to Huntington disease is different from counseling for depression from other causes. It focuses on issues that concern the person and their caregivers. For example, you might learn about:

• How Huntington disease can affect your behavior and your thoughts, and

• What you can reasonably expect from yourself, and how your caregivers can help.

Obsessive-compulsive behaviors

Many people with Huntington disease develop some types of obsessive-compulsive behaviors. For example, they might want to stick to rigid routines or to wash their hands a lot.

Some people develop new interests that they become obsessed with and anxious about.

Of course, there’s nothing wrong with having routines or new interests. But if these cause anxiety and other problems, there are medications that can help someone to relax and be less obsessive.

You can talk to your doctor about whether medications like these would be suitable for you.

A talking treatment called cognitive behavioral therapy (CBT) can also help people to understand the changes in their behavior and deal with them. 

Behavior and mood problems

Problems with behavior and mood can get worse as Huntington disease gets worse over time. For example, some people have problems with:

• Being irritable

• Mood swings

• Aggression, and

• Outbursts of bad temper. Some people with Huntington disease sometimes become physically and verbally abusive.

Several types of medication have been found to help with these symptoms, including:

• Antidepressants

• Mood stabilizers, and

• Antipsychotics.

Antipsychotic medications might sound like an alarming treatment. But these medications are often used to treat conditions other than psychosis. For example, they often just help people to feel calmer and less anxious.

These medications aren’t suitable for everyone. For example, some people find that they make their mood worse. So it might take a while to find out which medications are most suitable for an individual.

Problems with movement

Symptoms such as twitching and jerking can be difficult to treat, partly because the medications that can help can make some of the other symptoms of Huntington disease worse. For example, they can affect your mood, concentration, and coordination.

So it can take time to find something that helps you without causing other problems.

Physical therapy can help with some of these problems. Your doctor might be able to help you find a suitable therapist.

Pregnancy and medications

Medications called valproates are sometimes used to help with some of the symptoms of Huntington disease.

If you are a woman or girl of childbearing age, you should not become pregnant while taking medications that contain valproates. Valproates cause severe birth defects.

If you need to take these medications, your doctor should discuss them with you carefully and help you to make a pregnancy-prevention plan.

What to expect in the future

If you have relatives with Huntington disease, you can have a blood test to tell whether you have the Huntington gene. You don’t have to have the test, and many people prefer not to.

If you decide to have the test, your doctor might first refer you to a genetic counselor, who can discuss with you the pros and cons of having the test.

While many symptoms of Huntington disease, such as depression and mood changes, can be helped with medication and therapy, the condition is not curable and it is eventually fatal.

Most people live for about 20 years after diagnosis, but the symptoms will get worse over time. This means that it’s a good idea to try to look ahead and plan as well as you can.

For example, you might be able to keep doing things like working, driving, and cooking for yourself for years. But it’s a good idea to think about putting plans in place for when you can’t.

But there’s no need to rush most decisions. Huntington disease usually gets worse slowly, over a number of years. There is usually time to take in the news of your diagnosis and immediate treatment needs before dealing with the stress of making longer-term plans.

After your diagnosis, your doctor will probably want to check on you every three to six months. But you should see them more often if you feel you need to.

When you see your doctor they will check on what things you are still able to do for yourself, for example, how you are coping with work, and whether your treatments are helping.

They will also want to check on your mental health. Depression is a common problem in people with Huntington disease, and your doctor will want to do whatever is possible to help. 

Over time, long-term complications of Huntington disease get noticeably worse. For example, most people lose weight, have trouble swallowing, and struggle to do many things for themselves. 

Support for caregivers

People with Huntington disease will need a lot of care at some point. Caring for someone with the condition can be difficult and demanding.

Support for caregivers of people with Huntington disease should be a part of the care someone receives, and your doctor should be aware of this each time they see you.

Support groups can offer many kinds of help, including practical information about financial and community support.

Your doctor might be able to help you find support in your area, or you can search online.