Home English Sign in or join HDYO Kids Teens Young adults Parents JHD Friends Professionals News About Us Videos Blog JoHD Registry Books HD Research Events Fundraising Ask a Question Creative Expression Local Support Contact Us Links Terms Privacy Language Sitemap Donate Store
Kids Teens Young adults Parents JHD Friends Professionals

If no one in my family has been tested can I get tested?

February 22, 2013

Huntington's Disease Youth Organization

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


If no one in my family has been tested can I get tested?

Q. Hello, Just looking for some clarity on my situation. My great grandfather was believed to have huntingtons and died in his 60’s but was not tested. He had two sons, one of which (my grandfather) is showing signs as well: also never tested. From what i read my mother has a 50% chance of inheriting the disease but was never tested. My question to you is; being as no one was ever tested in my family can i get tested? Also would you want to be the one to tell your mother and grandfather they both DEFINITLY have huntingtons?? Thanks for your help.

Jeff, 26, USA

Ask a question

A. Hi Jeff,

Thanks very much for your question. I wonder how you first got to hear about the diagnosis of Huntington’s disease? Did the information come from your mum? You’re right in thinking that if your grandfather is showing definite signs of Huntington’s disease then each of his children including your mother would have had a 50% risk of inheriting the condition themselves (or to put it another way a 50% chance of not inheriting the condition). Is there someone in your family that you feel able to talk to about Huntington’s disease? This may help to clarify whether your grandfather has any awareness that he may be showing signs of HD/whether the subject has been broached by other family members.

I’m not sure from the last line of your email whether you are worried that your mother is showing signs of HD? Alternatively it may be that you recognise, correctly, that if you had a predictive test that showed you were gene positive, it would indirectly provide information about the genetic status of your mother and grandfather. Your main question was whether you could be tested if no-one else in your family had been tested. In general we do try where possible to get confirmation of a diagnosis of HD in the family (in some families where relatives have not wanted to be tested, they may have been clinically diagnosed by a neurologist). The reason for this is that there are other neurological conditions that are similar to HD. It doesn’t mean that you can’t be tested, but you can expect that a genetics clinic would want to take things one step at a time. For example if your mother is not showing any symptoms of HD and has not wanted to have a predictive test for herself, this would really need some further consideration about the possible impact and timing if you were to be tested.

On a positive note there is nearly always a way forward in this situation and I suspect you would find it very useful to talk with a genetic counsellor. It sounds as though your information to date has come from reading. There is quite a lot to know about HD and contact with your nearest genetic clinic would help in accessing information as well as providing support to consider your options. If you are unsure how to make contact with a genetics clinic in New York, please do get back in touch.

All the best,

Rhona Macleod