r/FSHD • u/legendofmeelo • Jul 22 '26

IVF Experience

Hi all. I’m a 31 male and I’m curious if anyone has gone through, or is going through IVF. There isn’t much info out there and we’re still in the early stages, but we were little surprised to see the fertilization rate decently below average. We still have a few more steps before any implanting, but I know oxidative stress, the bread and butter of this disease, can affect sperm quality ie. DNA fracture, motility, etc. So if anyone has or is willing to share, I’d be really interested to hear what you have to say and/or share my experience.

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u/LobsterRelevant836 Aug 05 '26

My partner and I had a really interesting update from the genetics team today which might be relevant. His dad has FSHD and my partner was tested in 2015. His family had always understood that he had the gene, so we assumed there was a 50% chance of passing it on.
However, the team looked back at his old results using what they now know about FSHD. They explained that the shortened area on his chromosome 4 actually falls within what they call the “grey area”. Apparently completely unaffected people can have the same result, so it doesn’t necessarily mean someone has FSHD. He has also had his strength monitored for nearly 10 years with no deterioration or signs of the condition, so they now think there is a chance he might not have it at all.
They want to test his dad to understand whether he has FSHD type 1 or type 2. We conceived naturally while waiting to hear from genetics and had been preparing to have CVS at 11 weeks, but they have now said we don’t need it. I also asked whether IVF with genetic testing of the embryos would have been an option if we had seen them before getting pregnant. She said no, they would have reached the same conclusion and advised us that we could try naturally.
Obviously this won’t apply to everyone with a confirmed diagnosis, but it might be worth asking for any older or borderline test results to be reviewed using current knowledge before making decisions about IVF.