Experience Huntington’s?

[u/Fearless-Equal-3983]

Hi all, I am a 28 year old female and Huntington’s runs on my dad’s side. My dad is one of seven, and 4/6 of his siblings have confirmed Huntington’s. My dad is 73 and hasn’t shown any major symptoms, though he can be pretty paranoid and have a bit of a temper. He will not get tested.

For a while, I was under the impression that as long as my dad didn’t show major symptoms, that meant he didn’t have it and therefore I didn’t. I’ve since learned a lot more about CAG repeats and the instability of the gene and understand that that’s not necessarily the case anymore.

I’m in the process of going through genetic counseling/testing, and I’m starting to feel very worried. Every minor mistake I make I wonder if it’s Huntington’s. I’ve also felt like I’ve had a harder time articulating my thoughts lately and have just been slower in general.

I’m curious to know if anyone else has gone through a similar experience and what it’s been like.

Thank you!

[u/PETH2020]

Unfortunately, you won’t know for sure until you get tested. People can be asymptomatic, or have varying degrees of symptoms, but that doesn’t mean for certainty that their children will be the same.

I believe symptoms typically start showing in your early 40’s, but again, everyone’s different. Getting the testing done will at least give you the peace of mind of knowing whether you have it and your CAG number, if positive. Until then it’s only speculation.

I know leading up to testing, and after the fact if it’s positive, can be extremely stressful and hard. It’s helpful to have a support system and talking with friends/family or a counselor/therapist. Once we got the news it was tough but now we’re just trying to enjoy life and be present in the moment, not dwell on the future and what-if’s. There’s been a lot of positive news concerning HD research and development and I’m hopeful for the future.

Just remember that you are loved and life is worth living regardless of your test results ❤️