It's been about two years since I found out that my father has Huntington's Disease. I repress my feelings about it everyday. I'm currently far away from my family as I'm living out of state attending college, yet every time I do return it's worse and worse. I'm falling into a spiral, scared that my two brothers or I might have it. I can hear the pain and stress in my mothers voice every time I talk to her on the phone. My family has chosen not to tell the rest of our extended family what is going on, but it's tearing me inside because I don't know how to cope with it. I'm scared, so scared, and I don't know what to do.

ortegagisela, sounds like you should take a deep breath first. Why has your mother chosen not to include the rest of your family? It is a scary disease but there are so many scary things in life. This just happens to be the one that brought us all to this website. My wifes mother passed about ten years ago from it and she tested positive 2 1/2 years ago. We have three children that also have the chance of getting it. You certainly go through alot of emotions. I have found that living in the present and not worrying so much about the future can be a big help. Being scared is only natural, you say you dont know what to do. Your in college! Try and have fun in and out of class. Although this is something that is a part of your life now, you still have to live. Take care and Smile!

Ortegagisela,

I'm at risk too.....I can relate to how you feel. I've known for about 4 years now, it is very hard, but I will say it does get a little easier. I think you go through all the stages of grief, and then every once in awhile you experience some of those stages here and there. The reality is, you can't change your gene status, whatever it may be, but you CAN choose on how you live your life NOW. The things that helped me were, exercise, praying, seeking God. (I know you may not be a Christian, since I don't know you) but these are the things that helped me. Just know you are not alone in this journey, and prayers are being said for you. You are young and sound like you are headed in the right direction by being in college, please try not to lose focus of what your goal is school wise. And don't forget you have a 50% chance of not having it too.

Welcome.You have come to the right place for support. There is a lot of support on this forum and links to other centers of support. It sounds like your Mom could use support, too. There are other young people who come to this site and there is also the National Youth Alliance (jus google it) for young peopel dealing with HD in the family. There is also the Stanford Hopes site, which is linked into this site and a new site for youth, which may also be linked into this site. There is also a lot of hope for HD.

Thank you so much for the support. It has been an up and down process. I'm glad that I'm not alone in this struggle and that I have you all in this site for support.