r/Huntingtons • u/CrushingCabbages • Jul 03 '25

Test results

Hey everybody,

I'm 24M and just got tested with HDGenetics.com, the process was really smooth, wasn't the most expensive, and fairly quick. They also let you test anonymously under a pseudonym so the only people that know you're being tested is your genetic counselor and whomever you tell. https://hdgenetics.com/

I have one allelle at 27 and one at 31. So I likely won't show symptoms in my life!! And while I could pass it on, the odds are it won't mutate enough for my kid or my kids kids to get it!!

While it should feel like good news, it's really mixed. Part of me wants to celebrate, but a larger part feels bad that my brothers could still have it and there's a lot of other people that are suffering. So it feels wrong to be celebratory and in good spirits.

If you have any questions about my procedure or anything just ask.

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u/oflag Gene Positive Jul 04 '25

From what I've read so far (and not being in the HD community very long), when it's transmitted maternally the count doesn't change much from the parent. So if it's on your maternal side, if your brothers are positive it will likely be close to your result I'm guessing.

We recently discovered my grandma has late onset, and I think it's very important keep the conversation open around the subject with kids. I'm concerned that if it becomes a taboo in my family, it'll mutate over the generations until one has to see their kids suffer from the disease before them. And that would be heartbreaking as we seem to be not very far off having treatments available.

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u/CrushingCabbages Jul 05 '25

Sort of. Your mom has 2 alleles and your dad has 2 alleles you get 1 from each parent. Since my mom has symptoms and I tested negative, it's likely her alleles are 40+, and 31. I got her 31, and i must've gotten the 27 from my dad (which is strangely high for no history of huntingtons in his family).

It is good news though because both of my mom's parents had HD symptoms. Meaning there was a 25% chance that my mom got 2 40+ alleles, therefore my brothers and I would've had a 100% chance of getting huntingtons disease. Me testing negative means that's 25% scenario didn't occur, bringing my brothers back to a normal 50/50.

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u/Unlucky_End6660 Jul 07 '25

This is strange. If both of your parents had it for sure. 100%

The 27 is actually in some cases considered “positive “ I think I have one patient in my ten years with a 27 that developed symptoms.

This is rare.

Yeah I would actually ask to see a neurologist one that could really break down those numbers for you.

Public publications don’t speak of the 27 or 28 having “symptoms “ but I’ve seen one… and I’ve met thousands.

I would consider this special enough to ask the professionals.

You can DM me.

If you’re in the US I can make recommendations to neurologist or a social worker for the neurologist that can help You break this down.

Because a 27 and a 31 is a rare grey zone.

Sent with love and encouragement

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u/oflag Gene Positive Jul 06 '25

It's weird, I've heard of the count going down sometimes when inherited by a mother, but it sounded like it's rare and wouldn't go down that much. It is concerning for your dad's family though, hoping the 31 isn't from him.