As a Fragile X carrier, I find it difficult to fit in with existing support groups.
An “IVF with PGD for Fragile X” group doesn’t exist. That’s too specific, I suppose, or maybe Fragile X isn’t well-known enough yet. With Fragile X being the “#1 Cause of Inherited Mental Retardation,” it’s surprising that nobody outside of the Fragile X community has heard of it, save a few medical professionals. It’s more understandable that people wouldn’t have heard of PGD (Preimplantation Genetic Diagnosis), since that kind of testing for Fragile X has only existed since 2008, and only in a couple labs nationwide.
Miscarriage forums were helpful for a little while after my first miscarriage, but they only took me so far. As soon as Fragile X came into the picture, I felt that my trajectory took me in an entirely different direction.
IVF groups *should* have been helpful when I was going through IVF, but mostly they were just depressing and panic-inducing. They should’ve been renamed Failed IVF support groups. It was stressful for me, a desperate woman, to read about all the other desperate women on there, listing all their unsuccessful cycles, talking about their angels and sending everyone else baby dust. I was looking for a more positive, comforting group, but I can see why they don’t really exist. Either you’re on the IVF/TTC site, or you’re on the Pregnancy site; there’s no in-between.
Fragile X groups are actually the worst. They’re intended for families who already have a child with the disorder. To join the group and shout that I might terminate for medical reasons (TFMR) seems like the worst kind of insult.
A TFMR support group would probably be helpful at this point, I guess. It certainly wasn’t when I was still completely committed to IVF with PGD, thinking it would work. I’m ashamed to admit that I judged everyone in those groups. Being a Fragile X carrier has turned many of my “beliefs” and “morals” on their heads, for which I am extremely grateful.