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Huntington's Disease Youth Organization

Me and my sister might have HD. How close is a cure?

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

www.hdyo.org

Q. Hi, my aunt and father have HD. Me and my sister are very afraid that we might have it as well. My sister had depression and often has thoughts of suicide because of this. We aren’t old enough to get tested yet but we both want to. I’m just curious as to what treatments are available for HD right now/ could be in the future? How close is a cure?

Angela, Teen, USA

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A. Hi Angela,

Thank you for reaching out to HDYO with your question. My name is Chandler and I work with young people and families all across the US to answer questions, listen and provide support. I’m here to support you and your sister.

HD is scary and many young people worry if they will get it. Is your sister getting treatment for her depression? Depression can be quite common and it is important to find someone to talk to and a good doctor to treat it. Testing is a big decision which is why someone has to be 18 to make it.

In regards to your question – there are some treatments to manage the symptoms (most the mood and movement symptoms), but nothing that can slow HD down at the moment. There is a lot of exciting research going on that scientists are hoping could be good treatments for HD. This article talks about one thing (gene silencing) that scientists are very hopeful about. There are a few different trials going on that are looking at different ways to do this. Science can take time, but there have been lots of promising advancements in the last few years.

HD is scary and tough. There is lots of support available for you. I’m here if you or your sister would like to chat. Where is the US do you guys live? Sometimes it can be helpful to connect with other young people who can relate to what you are going through. Do you think you or your sister would like this? I’m happy to help.

Please don’t hesitate to reach out if I can support you and your sister (or your family) in any way. You are not alone in all of this.

Take care,

Chandler