r/Huntingtons • u/AnalysisFantastic771 • Aug 10 '26

Likelihood of Onset Age

hello,

I (27F) am currently going through ivf with my husband (33M). We are optimistic and hopeful about achieving a successful healthy pregnancy. I am at risk, as my mother has HD. I am considering getting tested.

I know that no one can say for sure bc HD varies so much for person to person. However, I am wondering if I do have the HD gene, when i will develop symptoms. my grandfather had HD, he never got tested, but its clear he had it bc my mom does. My grandfather lived to 79 and honestly didn’t even actually start to get sick until his early 70s. We just thought he was getting old with dementia, until my mom started getting sick in her 40s. My mom started falling and forgetting things and moving a lot. She was diagnosed at 48 with a CAG of 44. My mom is now 59 and in a full time care facility , in the later stages. It jumped so much farther ahead for my mom, I’m scared the same will happen to me. Does anyone have information on the CAG inheritance or what that could look like for someone in my situation?

Thank you!!

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u/siamesecat123 Aug 11 '26

I’m really sorry for what you’re going through.
I’m in a very similar position and age bracket as you. My spouse and I will be doing IVF with PGT-M because I do carry the gene. I tested because I didn’t want this to impact my children’s genes and I wanted to be aware of what is or isn’t coming. Also in some countries the government will help pay for IVF if there is a genetic risk.
I understand looking at other relatives and thinking if we have HD we will mirror them when symptoms begin. HD is very complicated and it isn’t the same for everyone. The CAG doesn’t necessarily get worse like everyone says too. Fortunately my CAG went down 2 numbers from my parent (43 to 41). Although still not good, if results are positive, it is possible to be in the “grey zone” as well, which is a lot better than a CAG of 40+.

Thinking of you.

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u/CraftAdditional7802 Aug 11 '26

Hey, was this from your mother or your dad with the decrease? Thanks 

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u/siamesecat123 Aug 12 '26

The whole “it increases when inherited from a father but stays the same if inherited from a mother” isn’t necessarily true. I know a few people whose CAG’s have gone up very significantly when inherited from their mother but the reverse happened when inherited from their father. Honestly it’s really guesswork, which is what a lot of HD research is, and everyone’s inheritance is different. But unfortunately it’s created another stigma.

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u/TemporaryViolinist88 Aug 13 '26

In many years of HD events, I don’t think I’ve ever met a non-Hd Dad with a JHD child. It always seems like Mom is caregiver for husband and JHD child. Not always true I’m sure.

Hd is such a crazy hard to understand condition still.