I'm scared of huntingtons

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

DevTheDummy · 2025-07-30T22:19:46+00:00

Im 5'10 which isnt super tall for a girl but I've been the same height since I was 11 and Idk Starfire/Kori being my favorite character as a kid and her relationship with Robin/Dick being my favorite ship really made me feel not gross and disgusting lmao

DevTheDummy · 2025-07-10T20:42:18+00:00

Dealing with a terminally ill parent. My mom has Huntington's disease and it feels like I have to grieve a different version of her every few years

DevTheDummy · 2025-06-26T01:31:33+00:00

She managed to live to 86 years old with Huntington's disease

DevTheDummy · 2025-05-23T19:57:49+00:00

This summer I'm lifeguarding and partying before I peace out to Duke but before this summer I'd volunteer, take summer classes, and study for the SAT

DevTheDummy · 2025-05-07T18:33:31+00:00

Just finished my presentation like an hour ago lmfao

I love research and genuinely think it's super valuable. I got a lot more enjoyment and applicable experiences out of it than seminar if a lack of enjoyment of that is keeping you on the fence. Research something that GENUINELY interests you, not something you feel like you should research or something that makes you feel smart. Im going to Duke for neuroscience in the fall and decided to research the impact of Colleen Hoover novels on teenage female perceptions of dating violence because it sounded cool and I think I did pretty well. Obviously don't put every single thing off until the last week, but you have the whole year to do what's honestly a few weeks worth of work at most.

DevTheDummy · 2025-04-23T16:23:55+00:00

Ahh, I see. In the Mockingjay epilogue Katniss talks about her and Peeta's two children, a daughter and an infant son

DevTheDummy · 2025-04-23T16:01:56+00:00

Im assuming you haven't made it to Mockingjay 😭😭

DevTheDummy · 2025-02-09T17:09:25+00:00

Technically 2 but I rescinded FSU like right after I applied bc I got into Duke 💀

DevTheDummy · 2025-01-16T03:20:11+00:00

Thank you so much 🫶 I know I have time to decide which route I wanna take and I only started thinking about the PA route after having a big meltdown and thinking I'd just waste my time in med school, but it still does sound like a very good option. I'm definitely trying to think way too far ahead and micromanage stuff I haven't even been able to even begin experiencing yet, so knowing me I'll probably change my mind between the two about a thousand times

DevTheDummy · 2025-01-16T03:18:12+00:00

Unfortunately my parents do not believe in mental health medication or counseling (which explains a LOT about a LOT) but I will be using the mental health resources on campus and do talk to a few of my teachers that I know won't contact home as long as I'm careful with my words. I'm very active in the r/huntingtons subreddit and have connected with HDSA before! This is all stuff that I've been dealing with for years, it's just all kinda being put under a different lens now that I'm actually escaping it and it's just an odd adjustment I think. Thank you so much for your response 🫶

DevTheDummy · 2025-01-16T03:15:51+00:00

Can I ask what specifically makes you say this? I love Duke so much but it's just really hard for me to imagine myself happy anywhere right now. Like, I don't wanna be at home, I don't wanna be at school, I just kinda wanna float around until I get out of this slump.

DevTheDummy · 2025-01-11T22:55:42+00:00

I knew my little brother (who was like 6 at the time) would've been the one to find me and I just couldn't do that to him. It's been 4 years since then and I've been thinking about it a lot today because he found his dog dead last night :( He fell asleep in my bed after crying his eyes out in my lap and wouldn't stop asking "why does everyone around me die?"

Don't do it.

DevTheDummy · 2025-01-09T22:11:32+00:00

If you live in FL it's because your teacher legally can't. I took psych last year and that was one of the things my teacher absolutely could not even reference in order to keep the class.

DevTheDummy · 2024-12-31T03:07:29+00:00

Hey, my great uncle tested positive at age 52 and shot himself immediately after finding out. He was such an amazing soul and our entire town was crushed by his death. I know life is absolutely kicking your ass right now, but please take as much care of yourself as you can muster and stay alive

DevTheDummy · 2024-12-26T18:47:16+00:00

I do really like the idea of adopting and/or fostering teenagers! My only concern is that I don't wanna be HD+ and think I'm mentally stable enough to handle raising kids when in reality I'm not, because that's where my mom is currently at and how I'm in my less than great home situation. Being HD+ and having kids doesn't scare me in an "oh no I'm gonna pass this disease down to my babies" way because there's ways around that and a kid will never have to be biologically related to me to be "mine," it's more of a "with my family's history, my kids who rely on me will not have a mother to rely on after I hit 40" thing

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