9.04.2008

Fibular Hemimelia: Resources for Support

I've noticed that lots of folks are landing at this blog via searches on "fibular hemimelia," entering through a May 08 post I wrote on fibular hemimelia, amputation, and Oscar Pistorius. I thought it might be worthwhile to post some FH-related links on the assumption that those searchers are looking for more than my post offered. I've reviewed these sites, but do not personally frequent them. Like "We're Here, We're Queer, Get Used To It," I'm here, with fibular hemimelia, and used to it. But those landing here may be new to FH and searching for more experience-related info than the FH entry in Wheeless' Textbook of Orthopaedics provides, so here are some friendlier options.

I'll say this, quickly: I have not undergone leg lengthening or amputation as of today, though I had around 20 surgeries for my FH between 1974 (my birth year) and 1998. If your kid has FH and is young and you're wondering if you should undergo leg lengthening, my feeling is go for it. Really, it's not that bad, medieval as that external fixator (and thanks to Ilizarov, an ex-fix might not be necessary) may have looked on Ethan Hawke in Gattaca. I've seen a lot of kids with successful lengthenings in my surgeons' waiting rooms. I was on track to undergo lengthening when I was around 23, but once you're a grown-up with a 40-hour job you need to drive to and a family to help support, it's damn near impossible. Go for it while your kids are young. I wouldn't hesitate if it were my kid (and yes, I have some). I feel confident in recommending the International Center for Limb Lengthening in Baltimore, and especially doctor Dror Paley. I was their patient before they were a "Center"--were simply a wing of Kernan Hospital. I don't have enough close experience to have much of an opinion on amputation, but my May post detailed the ways in which many are now thinking it's a better course (in terms of patient pain and long-term satisfaction) than lengthening.

On to the links. I'll look for and post more as I have time to.

Fibular Hemimelia Support/Discussion Group at Yahoo
This group appears to be fairly active and up-to-date as of 09/04/08.

The description says, "This group is for parents [of kids] and kids who were born with fibular hemimelia. My wish is for this board to provide support, encouragement and hope for those seeking it. Membership requires approval for the safety of our members as well as a prevention to keep spammers away. Photos are allowed and encouraged. Please check out the LINKS section for more info and resources on FH."

"Fibular Hemimelia: Diagnosis, Treatment, and Support"
--article at Pregnancy Today

Help Jessica Walk
--a personal page (donation-seeking, but free to read, of course) by a girl born with fibular hemimelia in 1986 who is finally seeking funds for amputation at age 20 as she begins to feel that the pain/braces/surgeries she's gone through aren't cutting it for her. Her case looks similar to mine and it scares me to read of her pain worsening and some of her mother's comments ("Jessi's condition worsened. Every time she took a step the pain was excruciating. The bones in her ankle were beginning to deteriorate and crumble. Her suffering was such that she begged for her legs to be removed") (Crumble? Shit!), as I've noticed recently that my pain is worsening & function lessening, too: I'm tripping and falling a lot, and my leg aches pretty regularly. Doesn't appear that Jessica ever attempted leg-lengthening. I'm not prepared or expecting (who is?) to deteriorate that badly, but if I do, I can't say I'm jazzed about the thought of amputating at my age (34). I might prefer a wheelchair if that was an option.

Limb Differences
--described as an "online resource for families and friends of children with limb differences," this is a broader site that includes fibular hemimelia and has a Connections/Message Board, fairly active as of 09/04/08.

Hemimelia Support Group (London, UK)

Hope these help.

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