Patient education: Huntington disease (The Basics)

What is Huntington disease? — Huntington disease is a disorder that causes people to move in odd ways and can affect their mood and the way they think. In people with Huntington disease, nerve cells in a part of the brain die. The disease is passed on in families. If your mother or father has Huntington disease, you have a 50-50 chance of having it too.

People with Huntington disease usually start to show symptoms between the ages of 40 and 60. Some people show symptoms much earlier.

What are the symptoms of Huntington disease? — The symptoms can include:

●Movements (called "chorea") you can't control in the face, trunk, arms, or legs

●Feeling depressed, anxious, irritable, angry, paranoid, or like you don't care about anything

●Trouble interacting with other people

●Seeing or believing things that are not there (called "hallucinations")

●Trouble thinking clearly and forgetting things

●Weight loss

At first, the symptoms might be very slight, but they slowly get worse over time.

People with Huntington disease are at risk of suicide. If you feel sad or depressed, talk to your doctor or nurse about it. There are often treatments that can help.

Get help right away if you are thinking of hurting or killing yourself! — Sometimes, people with depression think of hurting or killing themselves. If you ever feel like you might hurt yourself, help is available:

●In the US, contact the 988 Suicide & Crisis Lifeline:

•To speak to someone, call or text 988.

•To talk to someone online, go to www.988lifeline.org/chat.

●Call your doctor or nurse, and tell them that it is an emergency.

●Call for an ambulance (in the US and Canada, call 9-1-1).

●Go to the emergency department at your local hospital.

If you think that your partner might have depression, or if you are worried that they might hurt themselves, get them help right away.

Is there a test for Huntington disease? — Yes. There is a blood test to check for the gene that causes Huntington disease. Most people who get this test do it because they are having symptoms that might be caused by Huntington disease. Other people have the test before they show any symptoms, because they are worried that Huntington disease runs in their family.

If you are thinking of having this test, ask your doctor to send you to a genetic counselor first. They can tell you about all of the possible risks and benefits of the test. For instance, a genetic counselor can help you find out:

●What the chances are that your kids will have Huntington disease

●How soon you might have symptoms, if the test shows that you have the disease

●Whether you could have problems with insurance if the test shows that you have the disease

How is Huntington disease treated? — There are no medicines that help with all of the symptoms of Huntington disease. But there are lots of treatments to help with specific symptoms. For instance, people who are depressed or anxious can take depression and anxiety medicines. Likewise, people who see things that are not real can take medicines to deal with that problem.

People with Huntington disease sometimes also use walkers, wheelchairs, or other devices to help them manage their problems. Plus, they sometimes work with physical or speech therapists to learn special exercises to help them manage.

Certain medicines can sometimes help with chorea. But these medicines can sometimes have bothersome or severe side effects, so doctors tend to use them only as a last resort. Chorea can get worse with stress, anxiety, and depression, so treating these problems can help with chorea, too. Padded furniture and beds can lower the chances of injury from chorea.

Unfortunately, there is no cure for Huntington disease. Most people die 10 to 30 years after the symptoms begin. If you have the disease, talk to your loved ones about the type of care you want when you get really sick. That way, they will know what to do, even if you become unable to speak for yourself.

What if I want to get pregnant? — Talk to your doctor nurse before you start trying to get pregnant. If you are taking medicines, you might need to switch to different medicines that are safer for a baby. You also might want to talk to a genetic counselor about the chances that your baby could develop Huntington disease.

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