Frequently Asked Questions

Huntington’s disease (HD) is an inherited disease that causes nerve cells in the brain to gradually break down. Over time, this causes symptoms that can disrupt everyday life—physically, mentally, and emotionally.

One of the most common symptoms of HD is chorea. In fact, the condition was originally referred to as “Huntington’s chorea.”

Originally referred to as “Huntington’s chorea,” chorea associated with HD refers to involuntary or uncontrollable movements. Almost everyone (~90%) with HD will experience chorea.

While there is no cure for HD, there are medications that can help relieve some of the symptoms, like chorea.

Just because you have an HD diagnosis doesn’t mean that all symptoms will appear at once or at all. Everyone’s experience with HD is different.

HD has the potential to affect every part of you, but the potential symptoms are usually seen in 3 main areas:

Movements
Uncontrolled movements (like chorea) and problems with walking, balancing, or moving around safely

Mind
Forgetfulness and difficulty with thinking, paying attention, and making decisions

Mood
Personality changes, depression, low or no motivation, irritability, and emotional reactions

Creating a community of support is an important step after an HD diagnosis or positive test result. Building a care team as early as possible ensures that you have support throughout your journey. Your care team can be a valuable resource and help connect you with useful information and support.

You’ll find an active community across the US and online. Individual mentors and support groups can offer emotional support, valuable advice, and a sense of community.

Remember that you are essential in helping the care team understand your loved one’s unique needs and treatment preferences. Your responsibilities will progress as the disease does, so it is important to know that there is support and community for caregivers like you.