I have been struggling for months about my husband's decision to persue testing for HD. I will respect his wishes. However, I can't help but worry that if it comes back positive that our depression will get so much worse and the anxiety and fear will worsen. He is planning to call the center very soon when our Long Term Care is finalized. Does any one think that the depression will ever lessen? Does any one know if the couseling for the test will help us to make a better decision as to whether to test or not. Really I just want advice on how to cope. I am so scared and wish we had never started talking about this. Before my husband mentioned testing, we never talked or thought about HD that much. Now it seems to dominate our thoughts. Help!

CJ878,

I can only offer my opinion. I don't know what your ages are but I am pro-testing. I am 29 and I got tested when I was 19. For me it was easy because as a kid I always dreamed of having a family and kids and learning that I could possibly have this genetic disease really crushed me because it crushed my one dream in life, to have kids. I knew that if I tested positive that it meant that I could still adopt. For me though, I knew that if I had the disease I didn't want to risk bringing a beautiful child in the world knowing that I may be setting them up for a future of HD. That was just my thought process. To me, I don't understand why HD is very big on genetic-testing counseling. I see it as if you test and get good results that you can erase your fears and worries. If you don't get tested you could always have the anxiety and fears, always thinking if what you're doing is a symptom or sign of HD. If you test positive for HD then I guess it forces you to accept the fact that are facing a future of HD and that could be difficult. I just believe that knowledge is powerful and you give strength to fear by not knowing. I would be interested to hear from someone that has not tested and why. So I guess for me it was the fact that I knew before I had children so to me it became about affecting my potential children, that it wasn't just about me at that point. Both my sister and I were tested and luckily we were both blessed and have normal CAG repeats. Because I tested positively it's easy for me to advocate testing. If it were the other way around maybe I wouldn't have wanted to know after the fact?

A doctor with significant HD experience advised that regardless of what you think will happen you should expect and plan for about a year of depression after testing. So don't be surprised if appropriate medication is needed (even after testing positive because survivor's guilt can also be a heavy burden in many situations).

Steve

HD can consume existence. Remember there is a 50% chance of a negative result. Life insurance is also something to consider prior to testing.


Pete