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Huntington's Disease Youth Organization

What can I do to help in Brazil?

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

www.hdyo.org

Q. My mother died at 51 with HD. My grandfather also had the disease, and my uncle has it too. I’m 29, I’ve married 6 months ago. I’ve never thought about doing the test and I intend to get pregnant through artificial insemination.

However, lately, I’ve been thinking about this everyday. I’ve read the topic about symptoms and I feel like that daily. Sometimes I pretend I’m a statue just to see how many minutes I can be still. I don’t talk about this with everyone, essentially I speak about this with my husband, who is always supportive.

One of my relatives has done a surgery and had a pacemaker implanted to control the involuntary movements. I’ve never read anything about that. What do you know about this surgery?

Living with the knowledge that I am at risk for HD is like living with a gun pointed at me every single day. I would like to talk with people that are experiencing the same problems. And I would also like to make myself available to help in some way.

Congratulations for the site.

Thank you,

Hugs,

Natalia, Young Adult, Brazil

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A. Dear Natalia,

Thank you for your message. It’s really tough to feel like a “gun is pointing at you every day”. I think you might need to separate the different issues here. The first question is about reproduction. There are a number of options open to people who have HD in the family but I’m afraid I don’t know too much about availability of those options in Brazil. Some people choose to have a genetic test before having children but this is something that needs to be discussed in detail.

It’s difficult to tell over email whether or not you have symptoms but there are a number of treatments out there which can reduce movements caused by HD. Surgery is really the last option for people with really severe movements. Surgery carries the risk of side-effects and it is not proven to work, so that does not sound suitable for you.

In Brazil there is HD research taking place, especially the ENROLL-HD study. I guess it’s a big country, so you might want to look on the ENROLL-HD website to see if there is a centre near to where you live.

With best wishes

Hugh Rickards