Posted on | February 19, 2004 at 5:10 pm | 9 Comments
Today may have been the happiest day of my life so far. I debated talking about this in an online journal, since it’s a very personal thing, but it’s such a big part of who I am and what I’m feeling that I can’t just ignore it here. Besides, it feels great to have some good news to talk about for once. But if you’re embarrassed reading personal details about a blogger, skip the extended text…
Today my younger sister got the results of her genetic test for Huntington’s Disease and it came out negative. This means she has no chance of getting the disease that my mother and my older sister died of (not to mention uncles, cousins, grandfather, etc.), and no chance of passing it on to her three kids. Essentially this wipes out the disease in our family and I never have to worry about it again. It’s an extremely nasty terminal disease with no cure or treatment, that usually strikes around middle age, and my 3 sisters and I each had a 50% chance of inheriting it from my mom. I took the genetic test 6 years ago and it was also negative. We beat the “odds” in our family – since only one of the four got it (although that’s not a good way of looking at it, since each person has a 50/50 chance of getting it, independent of what happens to the others).
My whole family and I have been living under this cloud for so long that it’s going to take some adjustment to come out of it. But that’s definitely an adjustment I can make. Nothing can make up for losing my mom and my sister to this monstrosity, but at least I know we’ll never have to face it again. Thanks to those of you who have known about this albatross and have supported me over the years!
Anyway, there’s a link on the HDSA page for donations, and I urge everyone to throw something their way so that other families who have been going through this but haven’t been as lucky will have more potential for hope. There’s a lot of research going on and they’re getting closer and closer every day to some kind of treatment or even cure for the disease. I’d like to see it go away for everyone forever.