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Can I get tested before I'm 18?

November 23, 2012

Huntington's Disease Youth Organization

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Can I get tested before I'm 18?

Q. Hi, my grandfather died of HD and now my mum also has it; at the moment shes going through the stages of twitching and anti-depressants, i have 5 siblings so i think the chances of someone getting it is inevitable. I need to know weither i have inherited HD so that i can start chosing different paths for my life (applying to university etc). is there any chance i can get tested before the age of 18? (im 17). also, are the results accurate? thanks.

Sam, 17, England

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A. Hi Sam,

Thanks for your question. I’m sorry to hear that your mum has started with Huntington’s disease. You probably already know Sam that you and your siblings each have a separate 50% risk of HD. You mention some very important points that would really be best discussed in person with a genetic counsellor. I’m not sure whether you’ve been to a genetics clinic before? I see from your email that you are living in England and each region in England has a genetic counselling service. If you wanted to discuss what is involved in having a predictive test as well as other options and perhaps ways of thinking about the choices you face, you could ask your GP for a referral. At the appointment you would have the opportunity to discuss your individual and family situation in more detail.

If you can, try not to get too fixed on the question of predictive testing at 17 vs 18. In some ways this may miss the point – whether the information a predictive test would provide would be useful to you at this particular time? (this is not just a question for 17 year olds, but for adults of any age considering a predictive test). Most individuals need space to consider what is involved in testing, how they and their family would cope with the information a test would provide and whether a test is the best alternative for their particular circumstances.

Yes, the results of a predictive test are accurate (usually reported as +1 or – 1 CAG repeat) and the CAG repeat size doesn’t change from the time you are born (you might find the section on HDYO about repeat size useful). It is important to remember that although the test can say whether or not someone carries the gene that causes HD, it cannot say at what age symptoms would start. I wish you all the best Sam and do let us know if you need any help making contact with a genetics clinic.

Rhona Macleod