Huntington's disease

Overview

Huntington's slowly affects movement, mood, and thinking over 10 to 25 years.

Genetic counseling helps families decide about testing.

Symptoms

Common signs:

• Uncontrolled movements

Less common

• Mood changes
• Memory problems

Look up a symptom: Low mood · Memory problems · New confusion or not acting like themselves · Trouble with balance or walking

When to get medical care

Causes

Gene change.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.
• It can run in families. Tell your doctor if a parent, brother, or sister has it.

Who is more likely to get it

• Family history

Possible complications

• Depression: Very common with HD
• Pneumonia: From trouble swallowing

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Gene test:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Genetic counseling
• Therapy and support

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a neurologist (brain and nerve doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• Families: Each child of a parent with HD has a 50 percent chance.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Treatment helps symptoms.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• Should I get a genetic test?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Huntington's disease