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Can symptoms develop at any time?

January 20, 2014

Huntington's Disease Youth Organization

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Can symptoms develop at any time?

Q. My mother is 48 and over the past couple years we have noticed her movements and speech seem to be off. By the time her mother was 48, she had passed away from the HD. My mom has 4 siblings. Two developed HD symptoms in their mid-30’s; one has none yet; and now my mom and her sister, who is in her 50’s appear to be developing early stage symptoms.

I don’t know if I’m in denial, but for a while I thought that it was just behavioral mannerisms they developed as the got older, and thought that since her other siblings showed symptoms a decade earlier, she was safe. Can the symptoms develop at any time, even if it tends to show up much earlier in our family?

Bailey, 23, USA

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A. Dear Bailey,

Thanks for your questions.

With regards to your mother, she is at a typical age to get symptoms of HD. The average age of symptom onset is between late 30’s & mid-50’s, but it is possible to have symptoms at any age. There is much variation within & between families with respect to both age of onset & initial symptoms. That is, one cannot assume that because your mother’s siblings got symptoms in their 30’s she or her sister will develop symptoms at the same age, assuming that they have the gene. Given the symptoms you describe, it would be worth getting an assessment from a specialist familiar with HD.

With regards to yourself, the symptoms which you describe could be due to anxiety. Most people at risk of HD are anxious (appropriately I think) and tend to look for symptoms in themselves. Fidgeting, spacey thinking & restlessness are classical symptoms of anxiety. As far as we know there are no ‘clues’ that allow us to predict if someone is carrying the gene, but doesn’t yet have symptoms. I see lots & lots of young people at risk of HD. Some who are are subsequently found to have the gene fidget and are ‘spacey’, but many are not. Likewise, some who are found to be gene negative fidget and are ‘spacey’, but many are not! Given your concerns about your mother & perhaps yourself, you have lots of good reasons to be anxious.

I hope that my answers are helpful. All the best for you & for family,