Well.... I dont really know where to start. I have stalked this forum for a while now, and am just getting the courage to actually post! Apparently huntingtons disease runs in my dads family. I am 28 and found out recently. I think my paternal grandma had it, but its weird because she was in her 80's and still lived my herself, she ended up dying from pneumonia I believe. My uncle has it and I think is in mid stages as well as a couple other aunts and uncles. My dad is 55 now and does has not been diagnosed. I hate the fact that every time I am around him I feel like I am watching his movements because I am so worried, or I am just waiting for it to happen to him. Its scary..... I just got married i August and I have 3 little boys. My dad says that his doctor says that since he is 55 without symptoms that he PROBABLY doesnt have it, but I know that is not the case and you can get it at any age! My dad does not want to get tested, Im sure out of fear, as he doesnt seem to have any symptoms. However, I seem to wonder if certain things that he does is because he has the HD gene and hasnt been diagnosed yet. I hope this makes sense, as long as I can remember my dad has always been a really early riser, but he also goes to be super early. So now my thoughts are, " does he have a sleeping problem because he has the HD gene?!?!?" or is this just HIM? Im so nervous. Im so scared. I keep hoping that this is a bad dream! I keep wondering should I worry about it yet or should I just worry if my dad happens to be diagnosed? Is it possible that I could get it and have symptoms before my dad even gets diagnosed? Part of me wants to just try and forget about it for a while and move on, but part of me just cant get it out of my head!!!! Everytime I get any free time I am searching the internet and looking at research and trying to find any promising news that I can about a treatment or something! Im so sorry I am rambling but nobody else understands!!!! Help! What are your thoughts? Opinions? Do you think they will find something that will treat this? I start getting discouraged when I read about promosing treatments but the article is dated from 2000 or something......Do you think the RNA treatment will work and WHEN are they starting trials?!?!?! Thanks for listening!!!!!

Hi Angela, The fact that your dad is 55 and has no symptoms is great and hopefully he will continue to have none. In which case you will never have to worry about HD. I know how scary it is as my dad was diagnosed at 35 years old and he passed away this year. I am currently being tested for it. I know its really hard but i would just enjoy each day and just hope that your dad does not have HD....IF he ever does then you can deal with that then. I would try not to worry too much.

With regards to treatments there is 'gene silencing' which is running trials in humans and its very promising. So dont give up hope. You should watch this video about potential treatments...its amazing and gives so much hope! https://www.youtube.com/watch?feature=player_embedded&v=UIsOCPVAV4Y

Melissa



Edited 5 time(s). Last edit at 11/13/2012 06:10PM by melissa1991.

Hi Melissa! Thank you so much for the response! Where does it say that they are doing trials this year? I have read up on gene silencing and it seems really promising and it seems like it will work! I know alot of articles say that treatment is still a while away.... how long is their while? 10 years? 40 years? I try to remain hopeful that if I ever have to deal with this that there will be something to help!

I think we can expect trials to start sometime within the next two years. Here's my article on the several different forms of gene silencing. And since I wrote it just last month, there's another type in the pipeline, using zinc fingers. (working on that article now):

[www.hdsa.org]

Hi, this is where i read about the trials:

http://curehd.blogspot.co.uk/2012/09/lifting-huntingtons-families-spirits.html

Also it mentions when the trials are taking place on the video

Im not sure how long it will be until the treatment is available though. We just have to keep fingers crossed x

Great article

Do you know how many years away these treatments are likely to be?