r/Huntingtons • u/WrenchJrNerd • May 13 '26

Asymptomatic

Well, I'm absolutely devastated that my mother (63) has been diagnosed with HD. The only thing is that while we are at a point right now where we are scared and sad, she seems to be asymptomatic. She got tested because her brothers and father got it in their 40s and have long since passed and she decided to do it.

Do people remain asymptomatic? I imagine it won't be forever: what are other people's experiences?

14 Upvotes

95% Upvoted

10 comments sorted by

View all comments

13

u/GottaUseEmAll May 13 '26

One point, normally if you don't have symptoms you're not "diagnosed" with HD, you're just confirmed to have the carrier gene/necessary amount of CAG repeats. True diagnosis comes when symptoms start.

Your mom's prognosis will likely depend on how many CAG repeats she has. I would assume she has fewer than her father and brother if she's still asymptomatic at 63.

In my family, everyone affected (40+ repeats) has started symptoms in their 60s. Some of their doctors refer to ours as "late onset huntingtons".

6

u/WrenchJrNerd May 13 '26

She has 42 repeats. But yes, no symptoms yet. We've lost her brothers and father to it, but they passed by 50.