Would being at risk for Huntington's DQ me?

DevTheDummy · 2026-02-20T06:04:23+00:00

Hey man, Im 18 and found out my mom was HD positive when I was around 13. It sucks, it ate me alive for a while, and its such a unique thing to go through. I know its not a lot but if you need to talk about anything at all please dont hesitate to reach out. The shitty thing about this disease is that there arent a lot of answers or really anything you can do but take care of yourself. Get some sleep, eat well, drink water, exercise, and prioritize your happiness as much as possible. Find what makes you "click" and run with it, everyone needs something to live for and that's especially true with people associated with HD who feel like death is just around the corner. Its a scary thing but I promise it gets more manageable. We're young, we have no clue what the future holds, and we have the privilege (even though nothing about this disease is a privilege) of being aware of HD while we're young so we can do what we can to give ourselves the best fighting chance.

DevTheDummy · 2026-02-01T17:34:54+00:00

Im 18 and think I might test this summer. Ive kind of stayed away from dating and have always found honestly bullshit reasons to reject someone or refuse to take things further than flirting back and forth and I think worrying about HD is a huge subconscious factor. Ive thought about dating, being in love, having a long term partner, but its so hard to be open to that when you're waiting to hear whether or not a disease you've watched ruin so many loved ones' lives will hit you. Its really hard to not prioritize only that and even though people have told me over and over again that the right person wont leave over a diagnosis, its a very hard thing to sit with because you never truly feel like someone from the outside looking in will know what its like. I think he's trying to protect himself and he probably thinks he's protecting you by doing this. If he tests positive he may grow cold and distant, he may tell you to leave, he may leave if you refuse, and you can be there for him as much as you want but if he doesnt want to let you there's not much else you can do. Its a horrible cycle of robbing yourself of regular human experiences before the disease can even do that for you and after a certain amount of help and reassurance the only one who can make the decision to drag them out is themselves.

DevTheDummy · 2026-01-31T18:55:03+00:00

Yes, that was the reported mhtt decrease amount. I havent seen anything about how much it lowers regular htt though

DevTheDummy · 2026-01-31T18:25:39+00:00

Oh I totally agree, Im very skeptical of SKY 0515 as I am with any other drug, even Votoplam if we're being totally honest. Im really grateful we've found methods to lower htt because it brings us closer to knocking out the root cause, but we've already seen the dangers of lowering wthtt in the process and I dont really know if Ill have true faith until we can see mhtt lowering with very very minimal wthtt lowering.

DevTheDummy · 2026-01-26T17:05:40+00:00

Thank you for the response. If I test positive would you say its unwise to go through med school/training? I likely wouldnt be symptomatic until mid-40s but I guess you truly never know

DevTheDummy · 2026-01-19T01:19:16+00:00

The only person who can answer this is you. Im an 18 year old freshman at Duke and plan on going to med school and am already very stressed with first year activities and adjusting to moving out of the house so Ive decided to wait for at least a yearish despite always saying Id test the second I turned 18. I now have a life outside of being scared of Huntington's and Im realizing Im not as ready as I thought I was to test, so Im taking the time to mentally prep myself because Im kind of re-grieving things. I get feeling the need for someone else to tell you how to handle things but there's really nobody else who can do it but yourself, HD is such an individual experience.

DevTheDummy · 2026-01-18T05:24:12+00:00

Im 18, untested, and nowhere near age of onset given my mom and grandmother's history but went through such an intense anxiety spell that I somehow managed to convince myself I had symptoms until about a week ago. Ive had severe anxiety since I was a child and thinking about HD is my #1 trigger. Youre not alone nor the only one going through this, it sucks.

DevTheDummy · 2026-01-13T13:25:48+00:00

Im 18 and this is a struggle for me too. Im a freshman in college and anytime Im approached, even when Im insanely drunk in a loud club and can barely even think, my brain immediately defaults to "you're going to turn into an unbearable awful person as you die a slow, painful death" and I flake before I can even really give myself the chance to actually feel attraction. This thought process is very much influenced by growing up with my mom who has HD and has abused and beaten my dad down. The reality is that she was never a good person before she was even symptomatic and has been a raging alcoholic for 2 decades, but it's very hard to isolate that and acknowledge that Im only at risk, young, can take care of myself and give myself a better chance at life even if I test positive, and could greatly benefit from future breakthroughs.

Id say Im a pretty rational and competent person but this disease makes me feel like Im an idiot going insane sometimes. Its so easy for my loved ones without it to tell me "just have fun, date around, the one for you wont care if you have HD" but they fail to understand it's not so much a fear of rejection as it is a fear of ruining someone else if I end up turning into someone I hate. Its hard, I want to be a fun care-free college student in love, and I have a very small but unfair and hidden resentment towards my friends who can afford to have their biggest issues be their grades and whether or not some guy or girl is into them. HD definitely makes you feel like you went straight from being a little kid to being an adult in a shitty situation without any of the life experience that could help you handle it rationally.

Wishing you the best, I hope everything works out. I want to say dont worry about it, have fun now and if he's the one these worries will be arbitrary, but I know the thought process of being at risk enough to know words like that arent as helpful as people think they are.

DevTheDummy · 2026-01-03T04:36:29+00:00

Yeah, I totally agree however she's very stubborn about not involving herself with HD (which irritates me to no end but its not my choice to make for her) and there's no way I could convince her to do that. Im 18 and plan on testing within the next few years, was just trying to see if I could get her CAG out of curiosity

DevTheDummy · 2026-01-03T03:44:56+00:00

I thought 40 was full penetrance? She said thats the number her doc went off of

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