What is Huntington’s
disease (HD) chorea?

HD chorea is a movement disorder related to the release
of dopamine in the brain. Dopamine is an important brain chemical that is responsible for many basic functions, including movement. Maintaining a balance of dopamine
in the brain is essential for controlling movement.

People with HD can have abnormally high levels of dopamine. This is what causes the uncontrollable body movements known as chorea.

HD chorea is uncontrollable fidgeting, squirming, or jerking that can affect any of the following:

Hands and fingers

HD chorea can cause the feet to move involuntarily.

Feet and mobility

Limbs and torso

HD chorea can cause issues with the face.

Facial movements and speech

90% of people with Huntington’s disease will develop HD chorea.

HD chorea can significantly impact and limit people's lives and daily activities. The good news is that there are ways to manage the uncontrollable movements and preserve independence longer.

plan for independence

What does Huntington’s disease chorea look like?

Chorea can seem like your body is doing a dance you can’t control. For some people with HD, chorea looks like uncontrollable:

Flicking of fingers and hands
Foot tapping and ankle twitching
Shrugging shoulders or flailing limbs
Torso rocking, twisting, or jerking
Irregular facial movements, including frequent blinking or grimacing
Make walking and climbing stairs difficult
Speech Implications

Discover what chorea looks like
for some people with HD

See the impact of mild-to-severe chorea in real patients, as it affects their face, torso, fingers, and feet.

“ I haven’t been able to walk very well sometimes…It just has been
difficult because I move a lot. Chorea affects my family who I love
very much. ”

—Teresa, living with HD chorea.

How is HD chorea diagnosed?

HD is suspected when someone has any of the following:

Progressive uncontrollable movements

Cognitive decline or change in personality and mood

Family history of HD

Chorea is the most common symptom of HD, and uncontrollable movements are usually an early symptom in the progression of HD.

Additionally, care partners are often the first to notice uncontrollable movements and their impact, even
before their loved one with HD is aware themselves. This is commonly referred to as anosognosia.

However, since other conditions can also cause irregular, involuntary movements, genetic testing is required to confirm an HD
diagnosis.

One family’s HD chorea story

Watch Mike and Myra Smith talk about the impact HD and chorea have had on their lives.

Being an HD care partner can feel overwhelming, but Eva, Don, and Hiren share how they found hope even in the most challenging times.

see their stories

transcript

MYRA: My name is Myra Smith. We live in Hartselle, Alabama. We have two sons: Chad, he is 39 , he’ll be 40 this year, and Ben is 35.

MIKE: I’m Mike Smith and I’m 65 years old, working on 66. The Jim Dandy Pet Food Company is being built in town, so I’ve been there for almost 40 years. I was their environmental and safety officer, uh, manager. So I handled all the safety and then the environmental programs in the site. And we, you know, had a good tight ship.

MYRA: The first thing I noticed, I guess, related now to Huntington’s, was movement. In his feet. We would be sitting together on the couch and he’d have his feet up against me and his toes would be constantly moving. And I was like, stop it! Please, stop that! Well, he couldn’t stop it, and I mentioned him going to the doctor, but he didn’t think it was a problem, so time went on. And then I noticed when he would sit, like over in the recliner, constantly moving. He was beginning to move a lot more. And more all over, not just his feet.

DOCTOR SUNG: The most outwardly visible symptom is the chorea. So, many mild patients, they just have the chorea, and they really don’t have much of the other cognitive or behavioral symptoms. So that is one way that patients present. They have this chorea it may or may not be that bothersome to them but somebody has noticed it, somebody in the family has noticed it or their GP has noticed it or something like that and they’ll initiate the referral.

MIKE: About two years ago, it, you know, the movement disorder started going. And, just, where I was unconsciously just... You know, it wasn’t hurting me, but it was, I was fidgeting, I was moving, and...and like I said it doesn’t hurt you, but everybody else watching you, just worrying, you know. Finally, I said, well, no I didn’t, my wife reminded me that we probably need to look into it and that’s when I started looking.

MYRA: I also noticed him walking through the house. He began to walk differently than he used to. His gait was different. He was stiffer. You know, there was just little signs there, that I knew something wasn’t right.

DOCTOR SUNG: Irregular, uncontrolled movements, if you have a little jerk like that in the leg or in the foot, it can disrupt walking fairly simply. You know, I think if you think about a baby that’s trying to learn how to walk how much it really takes for them to walk consistently without falling. You really need very smooth, very consistent movement of the legs, that is not interrupted and very coordinated, in order to walk well without falling. So it really doesn't take much of a disruption to disturb walking and which can lead to stumbling or near falling or fallings.

The daily impact of HD chorea

Chorea can be one of the most frustrating symptoms for people with Huntington’s disease and those who care for them to manage, impacting:

Everyday tasks
Work and hobbies

Social lives
Emotional well-being

Treating it can lessen the physical impact and help you stay independent longer

of people with chorea required assistance with some element of daily self-care

Do you struggle with any of the following activities?

Managing finances

Traveling outside the home

Planning and organizing everyday activities

Preparing meals/cooking food

Motivation to engage in daily activities

Taking medication when required

Getting dressed/washed

Shopping

Eating

Using household appliances

If you answered ‘yes’, it may be time to talk with your healthcare provider about medicine to help with the movements of HD chorea.

Unsure of how to prepare for the conversation with your healthcare provider? Find guidance to help know what to expect when
discussing HD chorea as well as potential treatment options.

Questions for your
healthcare provider

View one woman’s perspective on the physical challenges of HD chorea

Hear Susan discuss the personal challenges of HD chorea, including speaking and being understood by others.

transcript

Huntington’s disease’s biggest problem that I have really is the voice and speaking and swallowing and chewing and making sure that I don't swallow something, and having people understand me is a problem.

Managing HD chorea

Although mild chorea may not significantly interfere with your daily activities or require treatment right away, symptoms can progress. If symptoms begin to get in the way of daily activities, it can be frustrating, but treatment is available to manage uncontrollable movements.

It is important to note that current medications for HD chorea do not slow HD or address the underlying cause of chorea, but starting treatment as early as possible can help prolong your independence.

DISCOVER A TREATMENT FOR HD CHOREA

Find out more about HD and HD chorea

Planning for HD chorea
can help you preserve
your independence

WHERE TO START

Find support at the
Honestly HD Facebook page

JOIN THE COMMUNITY

What is Huntington’sdisease (HD) chorea?

HD chorea is a movement disorder related to the release of dopamine in the brain. Dopamine is an important brain chemical that is responsible for many basic functions, including movement. Maintaining a balance of dopamine in the brain is essential for controlling movement.