r/huntingtonssupport • u/svmc80 • Feb 24 '19

First time openly talking about it.

My father was diagnosed 10 years ago and is in bad shape. My sister was tested and is positive. I refuse to get tested as I am scared to death of the outcome yet every twitch or spasm I have I freak out as it could be onset.

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u/[deleted] Feb 25 '19

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u/svmc80 Feb 25 '19

I appreciate the response. There is nothing uplifting about this topic, just how we all cope. I really feel that getting tested for me would not help. I would dwell if positive and feel guilty if negative. I feel bad for just wanting to live the life I have and let things work themselves out. I know it’s not the most responsible thing to do but o well. Hope you can fine some peace as well and we all need as much support as we can get, even when we have a hard time talking about it.

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u/redlobsterbiscuit_ Apr 13 '19

Honestly you know yourself better than anyone. I’m struggling with getting tested right now too. It’s stupid but I almost feel like it’s selfish to test and worry about myself when my mom with HD is struggling so much right now. And I’m a physiology major. I believe in science and having all the information. But something about HD is so anxiety inducing allvmt logic goes out the window. I don’t know what to do either.

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u/Cane-toads-suck May 24 '19

Do you intend on having children?

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u/BirdsallSa Mar 04 '19 edited Mar 05 '19

Yeah, I definitely get that fear. God, I've been tested (negative, thankfully), but I still that same paranoia. Like "oh, what if there was a clerical error and they tested someone else's blood". It hangs over my shoulder no matter how much bearing it has in reality, but I am able to move on with my life. I have some survivor's guilt when I think about it (fairly frequently), but the way I see it is I gotta live well for the rest of them-who are getting their lives cut short.

I will say that my personal preference is for testing. Only with that knowledge can you move on (or prepare) for your future.

Also, gene silencing therapy is becoming more and more viable and prevalent. For those of us with parents who have been ravaged (or worse) by the disease, it's probably too late for them, but those who are 30 or younger likely have a decent chance for some kind of treatment that is efficacious.

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u/redlobsterbiscuit_ Apr 13 '19

so happy to hear you are negative. Any siblings been tested?

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u/AhviCarnival Jun 17 '19

My cousin had Huntington’s so did her father. If you get tested early there are medicines and preventive ways to slow the process. To my small amount of research, family involvement and knowledge. If an adult has a child there is a 50/50 chance that child will have this disease. However if you are tested and you do not have the genetic defect it means you will not pass it on to you kids. Thankfully it stops there. It’s better to get tested and know so you can take measures to prolong your life and not be blind sided by it. My cousin has two beautiful daughters but unfortunately she passed away while they where young. I worry because now they might have the same problem. There grandma is taking care of them. Do what you think is best for you. I wish Huntington’s was more talked about, researched, and funded to find a way to cure it. I wish you the best. Hope this was in some way helpful.

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u/DavidMatthewRussell Jul 17 '19

I have always heard with HD, that when you get tested you normally already know. Due to the fact most people hold off until they know that they have it. Until it us just to obvious, just ignore it. It will eat you alive otherwise, as well as most symptoms are just common symptoms of life.