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Huntington's Disease Youth Organization

Possible postive and negatives of getting tested?

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

www.hdyo.org

Q. My mother and grand mother have Huntington disease. I’m really wondering what the possible positive and negative effects may be if I get tested. Thanks

Scott, Young adult, Canada

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A. A. Hi Scott

Thank you for your question. Testing is a really big step, it should always be something done with the upmost thought and planning as this will all help you cope with the process. First, the result can be positive (bad) or negative (good) in itself. You won’t know which until you hear your results so you need to be mentally prepared for both outcomes. The testing process can be long and challenging. I always suggest being 100% sure about whether you want to be tested before going through the process.

Depending on your results, if negative then great, you are HD free and any children you have will have no risk. You can go on with life knowing HD is not going to happen for you, not being scared of that risk hanging over you. If you have siblings or other family members at risk still, you may feel guilty about not having HD, this may play on your mind quite a lot and is something to be ready for.

If positive, you may face discrimination with life insurance (unless you get it before your results), you will receive bad news, you will now know that at some point in your life you will get HD like your mother. This is very difficult to deal with mentally, strength and support would be helpful to continue in a good direction with your life. Any children you have would be at risk unless you went with another option for having children aside from naturally, such as IVF PGD, prenatal testing or sperm donation. On the flip side, you would know your future to some extent and this can be good for life goals (being clear about what you want to do with the time you have) and people can use their result as motivation to do more with life. It can be helpful in family planning, you and your partner would know where you both stand in a relationship if you were open about your HD status, you could plan to achieve personal goals such as marriage or having children. As I touched on before, you can have children free of the risk of HD if you wanted to, it’s not the easiest option but if that was important to you then getting tested is the first step to stopping that risk for future generations.

Either way you will probably need time to accept your results and adjust, this can take months. It’s not something you can rush through.

I hope this helps

Matt