Hello. I am 25 years old and I tested positive for HD when I was 17. I have 54 CAG repeats, but I am asymptomatic so far. My mother died about three years ago to HD. I have a sister and a brother. Both have HD. I just found out my younger brother tested positive. Thankfully, he is asymptomatic thus far but I am scared for him. My older sister is already wheelchair bound she started showing signs when she was 21. I am fearful everyday that because I have so many repeats, I am living on borrowed time.

My family has always been aware of HD, but it is not something we talk about. I was not aware of all of the support groups out there, and I am just looking for a friend.

Welcome Bella! You will find so much information and compassion here in this forum. Both of my sons have HD. My younger son has a CAG repeat of 51 and lives with me and my husband. My older son has a repeat of 48 and is still living on his own. What you will come to know is that the disease progresses differently in almost everyone who has it. You surprised me when you said your repeat was 54 and you are asymptomatic...fantastic news. I always thought my younger son's rapid progression was due to his high CAG repeat number but I think there is much more involved than just your #.

Take care,

Carla

Welcome Bella-so sorry you are all dealing with this and the loss of your mother. I'm also sorry "it's not something we talk about" You can come here anytime and talk about pretty much anything on your mind. Very helpful people, some HD positive, some at risk and some caregivers all with different journeys.
I am caregiver to my husband who was diagnosed with Cag 42 and has full blown Chorea, swallowing issues, anxiety. Can't just go by the #s.

I am so glad you are asymptomatic-that is really great news. We are in a local support group and they have said "Plan like you have it, but live like you don't".
Although I understand your feelings of "living on borrowed time", but really, we all are! I do not have HD (that I know of) but have had many other health problems that could not have been predicted. It's a very hard situation to know you have this CAG, but it does put a few things in perspective for you that only people with your status can understand. Hope some of them will reach out to you on this site and help you get through this.
Praying for each of you !
V

Hi Bella, my mom and aunt were fraternal twins with the same exact CAG repeats. My mom was symptomatic at 39 and my aunt at 50. I truly believe the stress in my mom's life compared to my aunts may have something to so with this. Just my thoughts. Welcome.



Edited 1 time(s). Last edit at 11/13/2013 07PM by 4yawkeyway.