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Huntington’s disease is a rare genetic condition that impacts muscle movements, mood, and thinking. People with Huntington’s disease usually only notice one symptom at first and then develop more symptoms over time.

Early symptoms of Huntington’s disease are common to many other diseases. A doctor can assess you for the conditions that cause Huntington’s disease-like symptoms.

If you do have Huntington’s disease, some therapies can help reduce some symptoms or make living with Huntington’s disease easier. There’s ongoing research into therapies to slow the progression of the disease in the future.

Early Warning Signs of Huntington’s Disease

Symptoms of Huntington’s disease come on gradually. Most people usually notice clumsiness or uncontrolled body movements as their first symptom. Mood or behavior changes or thinking problems are some of the first possible symptoms of Huntington’s disease.

Early symptoms of Huntington’s disease include:

• Clumsiness.
• Confusion.
• Difficulty concentrating or planning.
• Involuntary twitching or jerky movements.
• Memory problems.
• Mood changes, including anxiety or depression.
• Personality changes, such as increased anger or impulsive or hyperactive behavior.
• Poor balance.
• Poor coordination.

These symptoms come on gradually and get worse over time. However, mood changes often improve in the later stages.

Other advanced symptoms of Huntington’s disease include:

• Difficulty doing daily tasks, including dressing yourself, cooking, and driving.
• Difficulty speaking.
• Feeling slow or unsteady when walking.
• Seizures.
• Stiffness.
• Trouble swallowing.
• Weight loss.

Are my symptoms Huntington’s disease?

For those without a family history, mood, movement, or cognitive symptoms aren’t likely due to Huntington’s disease. Instead, they could have other causes, such as:

• Anxiety.
• Dementia.
• Depression.
• Medication side effects.
• Multiple Sclerosis.
• Parkinson’s disease.
• The effects of aging.

How Do I Know if I Have Huntington’s Disease?

Diagnosing Huntington’s disease includes tests to assess thinking, questions about mental health, a blood test, and brain imaging. Because Huntington’s disease is rare, your doctor will look for signs of other disorders in addition to Huntington’s disease.

A neurological exam

A neurologist can check your balance, coordination, eye movements, and reflexes by asking you to do simple tasks. In addition to Huntington’s disease, Parkinson’s disease, brain tumors, dementia, multiple sclerosis, and other disorders can cause these problems.

Cognitive tests

These tests assess memory, thinking, and language.

Psychiatry assessments

A psychiatrist will ask questions about your mood, behaviors, and emotions. With your permission, they may speak to family members as well.

Brain imaging

MRI or CT scans can show changes in the brain. These changes aren’t always obvious in the early stages of Huntington’s, but imaging can show how quickly the disease is progressing. It can also help rule out other conditions that may have caused your symptoms.

Blood (genetic) test

Mutations in a gene cause Huntington’s disease. A blood test can confirm if someone currently has Huntington’s disease or will develop Huntington’s disease in the future. However, it won’t reveal at what age they’ll develop the disease.

A blood test can also show that there’s no chance that a person has or will develop Huntington’s disease.

In rare cases, the blood test result is borderline. This means that it’s unclear if a person will develop Huntington’s disease.

Should you get a blood test if you have a family history of Huntington’s disease?

Some people with a family history of Huntington’s disease don’t want to take the blood test unless they develop symptoms. They don’t want to find out that they’ll one day get the disease.

Others with a family history of the disease want to do the test so they can either feel relief or plan for the future.

The test can also show if someone has a chance of passing Huntington’s disease onto their children. This can help when a couple is planning to conceive.

Before getting a blood test, it’s helpful to meet with a genetic counselor. They can help you understand the pros and cons of testing.

How Common Is Huntington’s Disease?

Huntington’s disease is very rare, affecting about nine people per 100,000 in the U.S.

For those who don’t have a family history of Huntington’s, getting the disease is unlikely. For those who have a parent with Huntington’s disease, there’s a 50% chance of developing the disease.

Who Gets Huntington’s Disease?

Any person with a parent with Huntington’s Disease has a 50% risk of inheriting the disease. Most people develop symptoms between the ages of 30 and 50. In about 5% to 10% of cases, the disease starts in childhood or adolescence and is called Juvenile Huntington’s Disease.   In rare cases, people have the mutation that causes Huntington’s disease despite no one in their family having the disease.

What Is Living With Huntington’s Disease Like?

Life with Huntington’s disease changes over time. In the early stages, a person might seem a little clumsy or forgetful. They may become more irritable or sad. They can still work, prepare meals, and engage with family, but some tasks might take more effort than before.

As the years progress, mood swings, muscle problems, and confusion happen more often. People with Huntington’s disease will need help with many daily tasks, including managing money. Various supports, adaptive technologies, and treatments can help.

In the late stages of the disease, people often need full-time care. People with Huntington’s disease usually die from lung or heart problems related to the disease, falls, or complications from swallowing challenges.

Many adults diagnosed with Huntington’s disease live for 15 to 20 years after symptoms begin, according to the U.S. Department of Health and Human Services.

Though people with Huntington’s disease have increased difficulty with learning or memory, they usually know where they are. Unlike dementia, they typically don’t forget family members and friends.

How Is Huntington’s Disease Treated?

There are no approved treatments for Huntington’s disease, although medications can help with symptoms like anxiety or depression.

However, research shows that gene therapy could slow down Huntington’s disease. Experts are studying gene therapy in clinical trials.

Treatments for Huntington’s disease include:

• Counseling — Speaking to a therapist or joining a support group can help with the emotional challenges of a Huntington’s diagnosis.
• Medication — Medication can help with depression and anxiety, and reduce involuntary movements.
• Occupational therapy — This can help you find easier ways to do things, like get dressed, despite stiffness. Occupational therapists can also provide strategies to help with forgetfulness or decision-making challenges. They can help people with Huntington’s disease access equipment like wheelchairs.
• Physical therapy — This can help with stiffness and balance issues.
• Speech therapy — Speech therapists can teach people ways to swallow food safely. They can also help people with Huntington’s disease speak clearly.