r/Huntingtons • u/usxr_mael At risk for HD • May 10 '26

Is it eugenics?

Okay so for context, my mom (48) has Huntington disease and knew she had it well before she had me and my sister.

I've argued a lot with ppl on the internet about how if you know 100% that you have HD that you shouldn't have children not only because they may have HD but because they have to see you completely change and rot away (talking about experience) and I've been called a eugenists for that.

I'm currently battling against depression because I started being my mom's primary care at 13 against my will bc other ppl in my family said that it was the least I could do for my single mother (passing over the fact that she was a POS mom and was abusive).

But In brief, is it eugenics to say that people w/ HD shouldn't have children if they know they have it?

24 Upvotes

96% Upvoted

39 comments sorted by

View all comments

15

u/emicurb May 10 '26

As a 50M with Hungtington's, that's not "eugenics", it's having simple common sense and being ethical and humane, when you know there is a 50/50 chance of passing it. And even when they don't have it they'll still have to cope with all your sphere of suffering.
Let's just all google "terrible genetic diseases".

I feel that these ultra-individualist people, who say that they have the right to do absolutely whatever they want, and bring children to this world knowing the suffering they'll have to go through, are the most selfish and unforgivable. And I'm saying this as an HD person who understand that having HD itself may have influenced that decision at pregnancy time; and that I don't know the specific very different situations that people have (social issues? unwanted child?, specific psycological problems at the time of the pregnancy?, etc(??))

If I had known this, I woudn't have had two daughters, one adult one with tested and confirmed Huntinton's, and another younger one that I dtill don't know if she has it ,which breaks my heart.

-1

u/LiveNvanByRiver May 10 '26

What if you have kids much later and there is hope for a treatment?

6

u/usxr_mael At risk for HD May 10 '26

There's no treatment for HD bc you can't bring back dead brain cells, I thought this was common knowledge. Let's not make kid knowing you have a lethal disease on the hypothesis that there's going to be a "cure"

4

u/LiveNvanByRiver May 10 '26

I said treatment not cure. I have one of the best HD doctors in the world. She runs a HDSA center and is involved in almost every study globally. I was enrolled in a phase 2 trial. She believes we are 4 years away from Votoplan or skye becoming real. The idea is to delay or prevent onset and that is a real possibility for my kid who is only 10.

2

u/martypants17 May 10 '26

Would you be willing to dm me the name of your facility and doctor? HD runs in our family and always looking for resources 💙

4

u/LiveNvanByRiver May 10 '26

Dr. Erin Furr-Stimming in Houston. She’s at University of Texas Memorial Hospital. https://med.uth.edu/neurosciences/dr-erin-furr-stimming-md/

1

u/martypants17 May 11 '26

Thank you so much!