HD is an inherited, progressive, neurodegenerative illness. Inherited means it passes from one generation to the next. Progressive means it gets worse over time. Neurodegenerative means it's a brain disease.

Symptoms of HD can present at different ages.

Adult-onset HD

Symptoms of HD typically start between 30 and 40 years old. There are also cases when people start to show symptoms of HD when they're much older.

HD can cause movements that a person can’t control, called involuntary movements. It can also cause mood changes, cognitive decline, or both. Symptoms of HD gradually worsen over time. Many people with HD may need additional care as the disease progresses.

Juvenile-onset or pediatric HD

Juvenile-onset and pediatric HD is less common than adult-onset HD and is typically passed down from a father. Both affect younger people, and the symptoms tend to progress more quickly. Symptoms often include seizures, learning difficulties, and changes in behavior. It can be more challenging to diagnose and manage symptoms of juvenile-onset HD and pediatric HD.

Our bodies contain millions of cells. The cells have 50,000 genes that hold instructions to make proteins. Proteins create the cell’s structure and allow the cells to grow and function. We all have a gene that makes the protein Huntingtin, which our bodies need to survive. We inherit one Huntingtin gene from each of our parents.

Changes, called mutations, to the gene’s code can affect how it works. Certain changes to the Huntingtin gene cause it to produce a protein that damages cells. Most people with HD have one Huntingtin gene that's normal and one mutated gene.

The parent with HD can pass on either the normal Huntingtin gene or the mutated gene. It's only a matter of chance who will inherit the gene for HD and who will not. Each child of a person with HD has a 50% chance of inheriting the mutated gene.

A person is positive for HD if they have inherited the mutated gene from their parent. A person is negative for HD if they inherited the normal gene.

If a person doesn't inherit the mutated gene, then they'll never have symptoms of HD. HD doesn't “skip generations.” If a person doesn't have the gene for HD, they cannot pass it on to their children.

About 30,000 (1 in every 10,000) Americans have symptoms of HD. Another 200,000 people, the children and grandchildren of people with HD, are at-risk of inheriting the disease.

People who will have symptoms of HD have the gene for HD from birth. Normally, the symptoms don’t start until people are in their 30s or 40s. Right now, every person who inherits the HD gene, if they live long enough, will eventually develop the disease.

Once the symptoms start, the disease lasts about 25 years. This is, however, difficult to determine: HD progresses slowly, and many times people don’t know exactly when symptoms start.

There's currently no treatment to slow down or cure HD. Carilion's HD program is available to provide support to people impacted by HD and to offer symptom management.

HD can cause 3 types of symptoms. It can be helpful to remember the symptoms with the letter M. People with HD can have 1, 2, or all 3 of the symptoms of HD. People with HD in the same family can even have different symptoms from each other.

The 3 symptoms are: 

• Mood: When people have mood changes, their personality can also change. They may become depressed or anxious. They can become irritable, or they can become withdrawn from others. They can become upset if their routine changes. They can have mood swings, where they feel happy one minute and then very sad the next. It's important to recognize that they might not be aware that they are having mood changes.
• Memory: When people have memory difficulties, they might have difficulty concentrating. They may have a hard time remembering things. They have a hard time planning or thinking ahead. They can forget how to do things that were once easy for them to do. They might have difficulty waiting. They might not know they're having trouble remembering things.
• Movements: People with HD sometimes have involuntary movements (movements they can’t control) called chorea or dystonia. These movements might look like the person with HD is drunk. They might have difficulty talking or swallowing. They might drop things. They might have problems with their balance. They might not notice these involuntary movements.

Carilion’s dedicated Huntington’s Disease Program is a collaboration between the departments of neurology and psychiatry.

The program's care team has expertise in treating and supporting people and family members impacted by HD. 

The HD program provides education, support, and treatment if:

• You have a family history of HD
• You're at-risk for HD and are considering testing for the HD gene
• You have tested positive for the HD gene
• You have tested negative for the HD gene
• You have symptoms of HD
• You have a loved one who has symptoms of HD

In addition to providing counseling for people at-risk, our HD program can order the test to determine if a person has the gene for HD. We can also manage your needs related to HD care.

Symptom management might include medicine or supportive therapy. The HD program can also coordinate referrals, including those for:

• Physical therapy
• Occupational therapy
• Speech therapy
• Home care
• Nutrition

We can also assist with benefits such as completing paperwork for Social Security income or disability insurance.

The HD program provides family support. This includes:

• Teaching family-based approaches to managing symptoms of HD
• Assisting with family coping and the social impact of HD
• Providing support to young people impacted by having a loved one with HD 
• Planning for the future

Contact us directly at 540-521-8306 to learn more about our program or to make an appointment.