Change

If you have read the post below you know we are trying to make the term “Hall’s contractures” refer to arthrogryposis multiplex congenita.

“Hi, my kids have arthrogryposis multiplex congenita… you know, Hall’s contractures! Google it!”

And it’s so much easier to Google than “AMC” which gives you movie theatres, or arthro…gry…posopsos… that word.

(Actually now if you Google “Hall’s contractures” the first few links teach you all about my kids’ condition! Awesome!)

I don’t want to lose our arthrogryposis identity or change the name of our wonderful Arthrogryposis Multiplex Congenita Support Incorporated group that I adore. We’re NOT swapping out one name for the other. What we’re doing is adding a colloquial term for a long medical diagnosis. (You know, how we call solanum tuberosum… a potato.)

We’ve started a petition on Change.org to do just that! We’re asking that American Medical Association, World Health Organization, Shriners Hospitals for Children, Children’s Hospitals and all major hospitals consider adding “Hall’s contractures” to the literature they distribute in print or on the web on arthrogryposis multiplex congenita. (For example: “Hall’s contractures or arthrogryposis multiplex congenita refers to a condition of the joints…” OR “Arthrogryposis, also known as Hall’s contractures, is cool beans…”)

Hall’s contractures has already been added to the arthrogryposis wikipedia page.

That’s it!

Please go here to sign your name to our petition and read more about the cause.  Pretty please do this for me. Please share this petition far and wide to anyone and everyone you know affected by AMC or NOT affected at all!

It may seem like such a weird or small thing to do, but you’d be amazed how much recognizing, pronouncing and remembering a diagnosis can make us feel less alone in the world and less strange. Sorry but arthrogryposis sounds like the plague and “Hall’s contractures” sounds like a simple physical condition. Plus both my kids had the straight arms (extension contractures) and referring to it as arthrogryposis (which literally means crooked) was so confusing and misleading. Calling it Hall’s contractures makes more sense! And I’m hoping this can get us more awareness and possible future funding for research!

Last year when we were on the news, the reporter mispronounced arthrogryposis. I have dear friends and family members who cannot pronounce it either. They love my kids, but they don’t know what they have. When fundraising for our adoption we had people say, “Can I just say you’re adopting a guy with a big long disability?” Why in the world would any celebrities or organizations want to fund research for us?! They can’t say the word!

Hall’s contractures. Sign the petition. Even if you think it’s dumb or won’t do any good. I’ll take the blame if this fails. Let’s just try something. Please.

One Response to “Change”

  1. Rosedel says:

    I signed the petition. Has anyone asked Dr. Hall what she thinks about this?

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