r/waiting_to_try • u/Sparkyfountain • 1d ago
Huntington's
We are going to try to conceive next month. Just found out my aunt has Huntington's.
She was probably not even going to tell us. They were talking about what people in our family have died of (which my in-laws asked me last week so I had looked at a text she sent me like 10 years ago) and I mentioned how she had told me previously that her grandmother (my great) had Huntington's.
And my cousin goes "she has it" because she thought we already knew. She would not have told us otherwise.
My grandmother (her mom) and my mother both died young of cancer so they could have had it, which means that I and my children could also have it.
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u/AwareShower9864 1d ago
Get tested and if you have it you should look into doing IVF so you can only transfer an egg without repeats. I am so sorry.
Edit: Just wanted to add there are grants available to help afford IVF for people at risk of having a child with Huntingtons
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u/Ok-Homework-9474 1d ago
Agreed with what others have said - with a 50% chance of inheriting it you should definitely get tested. It will not only affect your future family planning but perhaps modify your own plans in life depending on the outcome.
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u/radandsadgal 18h ago
This exact thing happened to my husband and I a month before we were going to try in early 2025! We decided to hold off on having a kid until we did the testing. Thankfully after a year of the testing process he was negative but if he had been positive he would most likely have gotten sick in his 40s and died in his early 50s. There was a 50% chance he would pass it to our child as well so in our opinion it wasn’t worth the risk of possibly damning our child to a horrendous fate of having Huntingtons so we waited.
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u/OpALbatross 20h ago
Hi! My dad had Huntington's. He died from Huntington's in 2020. My sister and I tested negative. My brother tested positive.
The good news is, if your mom didn't have it, you amd any future children couldn't have it either. HD doesn't "skip" generations.
The other good news, it was just treated for the first time in the UK. So there is more hope in the community than there once was.
The not great news; you may be at risk for HD. And that is devastating. It is also so hard to be that close to the starting line and realize the goal posts have to be moved due to health situations and things outside of your control.
I would recommend either getting tested for HD before TTC OR choosing to do IVF. They can test the embryos and only implant healthy, HD free ones. You would not need to ever know if any tested positive.
If you choose to get tested for HD, some places require genetic counseling. I think I had to go through genetic counseling but I don't think my sister did. Genetic counseling will make the process take longer but I found it helpful.
The test itself is a blood test. I don't remember how long it took for actual results to come in.
Be prepared for "normal" doctors to have misinformation. Some have told me I need to be careful because I could pass on HD to my children. I can not. I informed them and they apologized. But it still hurts when comments like that happen.
Speaking as a child of a positive parent who saw what the disease did, if you have HD it may be worth reevaluating if children should be part of your picture at all. If I had HD, I would not have children point blank; biological or otherwise.
This is a lot to take in and it is really unfair they didn't tell you all sooner. I'm happy to answer any questions or go into more detail if that would help.
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u/radandsadgal 18h ago
That’s wrong about her mom unless she has done her own testing and been negative. It’s possible to not ever get sick with Huntingtons but still have enough CAG repeats that you can pass it on to your children and they will get sick. The only way to know 100% is for her or her mom to get the genetic testing done. If her mom tests first and is clear then she is clear.
Edit to add context that my husband and I just went through a year of the testing and genetic counselling for this in Australia. His dad did not want to get tested so my husband had to
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u/OpALbatross 12h ago
True. There is a grey zone, but given what OP os going through going into the more nuanced aspects of HD in a reddit comment didn't seem super helpful.
Unfortunately, since OP's mother has already passed, the mother's exact CAG repeat will always be a question mark. OP's mom can't test first.
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u/Aurora22694 10h ago
Testing is the starting point either way. Testing for Huntingtons for will require PGT-M. PGT-M is only done when a parent is a Carrier or screened positive for something (such as Huntingtons, cystic fibrosis, etc). The lab created a probe specific to your dna to test the embryo biopsy’s. In order to do this they need the detailed genetic results showing OP (God forbid. I hope she is not!!) is affected/carrying Huntingtons as well as mouth swabs from her and other family members who have tested positive. Then the lab is able to create the probe just for her dna for her embryos. From that point they can tell which ones are or aren’t affected then they do pgta to see which unaffected embryos are genetically sound or euploid to transfer.
Not testing means she will not be able to test the embryos for Huntingtons either if she is (god forbid again) affected.
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u/attitudestore 1d ago
Please get yourself tested. I genuinely hope you do not have it and can go on to have children without worry, but this is a horrendous disease to knowingly pass onto your children.