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Huntington's Disease Youth Organization

What does HD feel like?

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

Q. What does it feel like to have HD (Huntington’s Disease)? Does it cause any pain, or could you have it and not know that you do? I am doing a project at school and I am supposed to ask a professional about how it feels. Thank you.

Catie, 15, USA

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A. Dear Catie,

Thanks for your question. The simple part to answer is that pain is not a problem in Huntington’s Disease (HD). The rest of the question is difficult to answer.

The initial symptoms in HD are very variable & so each patient will potentially experience different symptoms. In general the condition creeps up slowly, rather than starting suddenly like a stroke or heart attack. Many patients are not aware of having symptoms because of this even when their family know that something is wrong. That is, it is possible for someone to have HD for a year or 2 and not realise.

Anxiety, depression & obsessive compulsive thoughts and behaviour are very common in HD. Patients feel these symptoms like anyone else would. These symptoms often respond well to medications. Twitching movements (chorea) are often not recognised or distressing until they are severe. Memory loss, difficulty with planning, impaired concentration/attention and reduced organisation are also common & often not recognised by the person with HD. I hope this is of use to you & hopefully will relevant to your project,