Hello all!

New to the forum today. I just accompanied my parents to my father's genetics counseling appointment which confirmed his positive HD status (CAG 42). He has been showing symptoms for a while and we have seen the disease progress in his siblings my aunt and uncle so it wasn't much of a shock. My Aunt Diana was the first one diagnosed (CAG 46) several years ago and has since declined and past away. My father is now the third positive for HD out of 4 children and his youngest sister still untested.

I am Katie, age 27, now officially at risk and feeling lots of mixed feelings mostly fear and anxiety about what is yet to come with my father and my untested family members. I am one of four children all untested and at risk. My oldest sister also has my four beautiful nephews who are also at risk if she tests positive. I have taken away a lot from this forum already and am anxious to hear from others that are untested and at risk. Very nervous for what is yet to come!

My mom had HD. Her CAG was low, and she lived a fairly long life. I have 4 siblings. No one has been tested. I was about to get tested about 3 years ago, when a genetics counselor talked me out of it. I was 40 at the time. She said negative test and your life will change. She thought that I'd be too depressed.

I have considered that also. I do think at this time that it would be too hard for me and everyone in my family for me to get tested right now. It is something I will be thinking about for a long time. It's good to hear from others in the same situation! Thanks for sharing that with me.

Welcome to the forum! I am glad you found us but sorry that you have a need to be here. It doesn't sound like right now is the best time for you to test. You will know when the right time comes. Right now the first gene silencing trial is underway. We all have our fingers crossed! I look forward to the day when those at risk test because a treatment is available.

Hi Katie,

I'm new to this forum today as well. Your message hit home for me and I wanted to reach out and introduce myself. I'm 26, getting closer to 27, but I have gone through all of the testing and am gene positive -CAG 44. I (selfishly) had always wanted my dad to get tested once I found out my grandfather had passed from HD (probably in my mid teens). After years of deliberation, my Dad decided to get tested and came back positive a few months after I had graduated from college. Once we received his test results, I immediately began the process of being tested To me, getting the results were an important part of my decision making process as I laid out my life plans.

I think you'll know in your heart when the time to get tested is right. Some people choose to never get tested, I think everyone deep down knows what they can and cannot handle and when in their life they are comfortable with the results. I truly believe that everyone is entitled to that right and should make the decision when they're ready. For me, I just wanted to know.

They have some great trials going on and can make sure children are born without the HD gene. That makes facing the future a little easier for me. I'd be lying if I said there weren't some days where I wish I hadn't been tested. My early 20's were a lot more trying than most people my age and maybe harder than they needed to be. There were stages of depression, denial, fear, anxiety experienced by me but also my family and friends. Although getting tested made my life harder at the time, I still am happy that I decided to be tested and proud of myself for being proactive.

Coping with the idea of HD has been very hard but I've finally started to come to peace with it in a way. I'm grateful for each healthy day I have and try to take the time to take a breathe and realize how lucky I am and how wonderful life is whenever I have the chance. I'm currently in 2 clinical trials (one of which is the first ever preventative trial in the US!) and have a great HD doctor. I'm not sure I would have been able to accomplish any of that had I not been tested.

Let me know if you want to talk! I'd be happy to answer any questions or share more of my experience thus far. I'm so happy to have found this amazing place they've set up here for us. There is so much I want to learn from everyone here. My dad is 51 (CAG 44) and is in the beginning but heading towards the middle of progression. My aunt is 48 and has HD in the same stage as well. I have 2 younger cousins and 2 little brothers who are 9 & 11 and they are all at risk.

Welcome to the forum Vin, and what a positive post you wrote for sure

Thank you Barb! I'm happy to become part of this community. You all inspire me so much.

Welcome to both of you. I'm sorry the need is there for you to be here but you have chosen a very caring community to assist you in your journey.
There are lot's of good folks here that will lend an ear. Welcome again.

Mike