The Struggle to Find Support, Part 2: Online Forums

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.


2 thoughts on “The Struggle to Find Support, Part 2: Online Forums

  1. There is a great one at the Baby Center web page if you haven’t found it yet. It is mainly for people who have tfmr or are contemplating it, but I think that they would welcome you.

    You could even ask to be matched up with someone else who faced tfmr for Fragile X. It’s just nice to know you’re not alone.

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