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Huntington's Disease Youth Organization

How common is HD in China?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. How can you tell if you have huntington’s disease? And are you able to get it at the age of 13? How do you know if you have it? Is it common in China?

Samantha, Teen, USA

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A. Hi Samantha,

Thank you for reaching out to HDYO with your question. My name is Chandler and I work with young people across the US to answer questions and provide support.

I’ll do my best to answer all your questions.

The first thing about Huntington’s Disease is that it is genetic. This means that one of someone’s parents must have HD for them to be at risk. If there is a family history of HD, then there are a few different categories and symptoms that someone with HD has. Symptoms for HD typically begin to show between 30-50 years old. There are cases of younger and older people having symptoms, but generally this is considered and adult-onset disease. The symptoms are often broken into three categories: cognitive (or memory), motor (movement) and behavior. People with HD often have a hard time remembering things or learning information. We call the motor symptoms chorea (from the Latin word for dance) and these are uncontrollable movements that an individual has. It may be something as tiny as a finger tap or something much more noticeable. Lastly, behavior changes can be a number of things. Sometimes people get a bit depressed, sometimes they can get angry quickly – it all depends. This video explains this all quite well.

As I mentioned above, HD can occur at any age, but generally we don’t see someone with symptoms until they are 30-50 years old. To know you have it, you have to be seen by a few different doctors, but generally someone would first go see a neurologist. Again, if someone doesn’t have a parent with HD – they shouldn’t worry about getting HD.

In general, about 1 in 8,000 people have HD. There are many countries that are just beginning to know about HD as scientists and researchers are learning more about it and there sometimes seems to be more of a prevalence in some countries over others, but HD has been found on pretty much every continent in the world.

I hope all this information helps. Do you have concerns that you may have HD or someone you know? I’m happy to answer any more questions or provide any additional support.

Take care,

Chandler