What is Huntington’s disease?
Huntington’s disease is an inherited brain condition. It slowly affects movement, thinking, and mood. It is caused by a change in a single gene that is passed down in families.
Each child of a parent with Huntington’s disease has a 1 in 2 chance of inheriting the gene change. A person who inherits it will usually develop the disease at some point in life. A person who does not inherit it cannot pass it on to their children.
Symptoms most often begin in adulthood, often in midlife, and change slowly over many years. Every person and every family is different.
Common symptoms
Movement symptoms
- Chorea. Quick, dance-like movements that a person does not control. They can affect the face, arms, legs, and body.
- Clumsiness and balance changes. Walking may look unsteady, and falls can happen.
- Speech and swallowing changes. Speech may become slurred, and swallowing can get harder over time.
Thinking symptoms
- Trouble planning, organizing, and focusing
- Slower thinking and trouble switching from one task to another
- Less awareness of one’s own symptoms
Mood and behavior symptoms
- Depression and anxiety
- Irritability or outbursts
- Loss of interest or motivation
Changes in thinking and mood can start before the movement symptoms. They are a real part of the disease, and they can be treated.
How we make the diagnosis
The diagnosis starts with a careful exam and a detailed family history. At your visit, we will:
- Ask about your symptoms and when they started
- Ask about your family history, including relatives with movement, memory, or mood problems
- Review your medicines, since some can cause movements that look like chorea
- Examine your movements, eye movements, speech, balance, and thinking
A blood test for the gene change can confirm the diagnosis.
Genetic testing
Genetic testing is a personal decision, and it can affect the whole family. For people who already have symptoms, the test can confirm the diagnosis. For people who have no symptoms but have a parent with Huntington’s disease, testing is a bigger choice. The result cannot tell exactly when symptoms will start, and it can bring strong feelings.
Family members may also consider getting genetic testing to see if they will develop Huntington’s disease.
Treatment options
There is not yet a treatment that slows Huntington’s disease. But many symptoms can be treated, and good care can help people stay active, safe, and connected.
Medicines for chorea
Chorea does not always need treatment. When it causes falls, injuries, or trouble with daily tasks, medicines can help.
- VMAT2 inhibitors. This class of medicine lowers the amount of dopamine released in the parts of the brain that control movement, which calms chorea. These medicines can make depression worse in some people with Huntington’s disease, so we watch mood closely.
- Some antipsychotic medicines. These can also calm chorea, and they may help with irritability or other behavior symptoms.
Make sure you bring a typed list of medications used to treat Huntington’s disease that failed or caused side effects. Use BPMedTracker to track your medications and print a list.
Mood and behavior
Depression, anxiety, and irritability are common and treatable. Treatment may include medicines and counseling. Please tell us about any mood changes, including thoughts of self-harm. If you are in crisis, call or text 988 (Suicide and Crisis Lifeline), or call 911.
Therapy and daily life
- Physical therapy, for balance, strength, and fall prevention
- Occupational therapy, for daily tasks and home safety
- Speech therapy, for speech and swallowing
- Nutrition support, since many people need extra calories as the disease changes
Care for the whole family
Huntington’s disease touches every member of a family. Family members may be caregivers, may be at risk themselves, or both. We make time for questions from family members and help connect families with social workers, support groups, and research studies.
When to see a specialist
Consider seeing a movement disorder specialist if you or a loved one has:
- New movements you cannot control, with or without a family history of Huntington’s disease
- A family history of Huntington’s disease and questions about testing
- A Huntington’s disease diagnosis and a need for ongoing care
- Changes in mood, thinking, or behavior along with movement changes
Call 940-828-MOVE (6683) to schedule a visit.
Support and resources
Families do not have to face Huntington’s disease alone. The Huntington’s Disease Society of America offers education, social workers, and free support groups, and its Greater North Texas Affiliate serves families here in Dallas–Fort Worth.
