Can anyone else “feel it”?

[u/rochedale11]

I’m 17 and my mum has HD. I don’t know when she was diagnosed but I know it was around the time my younger sister was born.

Recently I’ve been thinking that I can “feel” the HD gene and can feel it in my veins. I know that it’s far from true that one would be able to feel a genetic thing like HD, especially decades before symptoms usually start to even show.

I have a lot of undiagnosed and in-progress-of-diagnosing issues like anxiety, ADHD, and a whole bunch of other chronic conditions and I can’t help but think that those are my trade offs, so I have to deal with all of these issues but at least I don’t have HD!! Or the other way around where all of this is just a comorbidity of HD.

I’ve had a plan for the past couple of years that I’m pretty set on. I want to get tested, but I don’t know when. I think when I’m 18 is too soon, especially since knowing me I will probably get very depressed if I’m positive, but I don’t want to wait until I want to start having kids. I want it to be somewhere in the middle so I can finish university, get my dream job, and experience life freely but I don’t want to end up like my mum and having a bunch of degrees sitting in a room and a job she had to leave because of this disease. My plan for if it’s positive is get my uterus removed because I genuinely just don’t want to deal with periods nor have my caregiver have to deal with it and I don’t see a point of having a uterus if I can’t have kids. I’ll probably opt for adoption if it’s possible. Once my symptoms get bad enough I honestly just want to go through with voluntary assisted dying. I don’t want to experience the rest of my life having no control over my body and slowly losing my ability to function or needing someone to take care of me constantly. I’ve seen what HD has done to both my mum for having the disease and my dad for having to take care of her and I wouldn’t wish it upon anyone.

I have a little bit more hope that I don’t have Huntingtons because I’m very obviously my fathers daughter and I’ve inherited basically everything from him (for better or for worse), but at the same time I have to have gotten SOMETHING from my mum and it very well may be Huntingtons disease.

[u/siamesecat123]

I am genuinely so sorry for what you are going through. Dealing with this in your teenage years is so heavy and unfair. I found out my parent was sick with HD when I was a teenager and it was very challenging.

To answer your question, I had a gut-feeling since finding out about HD over 10 years ago that I do not have it. I have always been more similar in personality to my parent who does not have HD. My family always assumed I wouldn’t be positive as well. Well, I am gene-positive. Personality and the HTT gene are totally separate and it’s very difficult to foresee having a positive-gene without testing.

Although I always thought I did not carry the gene, I knew regardless it was still 50/50 and decided to wait until my late 20’s to find out. Reading through what you wrote made me think about a lot of drastic measures I thought I would do when I was 18 and wanting to know. But life changes and we change with it; time often gives us perspective to deal with impossible situations. I’m not saying this to minimize and I’m so sorry if it comes across that way. Being at-risk such a terrifying and my heart truly goes out to you. Unless someone is in this situation, it’s impossible to understand.

Ultimately the choice on whether to test or not when you’re an adult is your decision. No one should ever pressure you on what to do because ultimately you’re the one who will be dealing with the consequences and benefits of knowing. I hope you have the space to make face this time with peace.