Add name Hall's contractures to refer to arthrogryposis multiplex congenita
This petition had 449 supporters
Arthrogryposis Multiplex Congenita (or AMC) is hard to say and hard to Google. Arthrogryposis comes from the Greek and means "crooked joints." Most of us affected by this condition cannot tell professionals about arthrogryposis without being asked, “Um… can you spell that?” This includes physical therapists, occupational therapists, school teachers, regional center directors, early head start program coordinators, pediatricians, doctors, etc. These are all people who work with those with disabilities! Try telling the average person on the street and you just get a funny look.
And people with arthrogryposis multiplex congenita have been all over the news, have been published authors with books about their condition and have a national support group and annual awareness day, but very few people can pronounce or remember the name of this condition, including family and friends of those affected by it!
So this condition is hard to say and research online. So what's the problem?
Here’s the problem: Research. Funding. Long-term studies.
Arthrogryposis multiplex congenita is a life-long, permanent condition with no cure, only treatments to help gain more functionality. Most of the types of arthrogryposis are tied to genes we don't know enough about. The most common type of arthrogryposis is amyoplasia and we still do not know what causes it! So it keeps happening! And people (especially adults) with this condition are often treated by orthopedic doctors and surgeons who don't know enough about it.
We need more research into the long-term effects of surgeries and procedures we subject our kids and loved ones to. So little funding is available that most of the work in identifying the over 400 types of this condition came from a grant Dr. Hall received in the 1980s. For a condition that affects so many people, most have never heard of it! But maybe if it had a more common name people would at least know about it and support funding for it!
Imagine if people with amyotrophic lateral sclerosis were just happy to have that long diagnosis. But who hasn’t heard of Lou Gehrig’s disease? It’s the same thing! Only with a public awareness like no other! And like amyotrophic lateral sclerosis, we wish to keep our condition of arthrogryposis multiplex congenita that defines us, but also call it by Hall's contractures in the medical literature so that it gets more awareness by being memorable and pronounceable.
Hall's contractures is a colloquial term for arthrogryposis multiplex congenita named after Dr. Judith Hall who has spent over 40 years researching the condition. In some cases it describes the condition much better since contractures in extension (limbs stuck straight) are also referred to as arthrogryposis (which literally means "crooked"). Hall's contractures also differentiates the condition from a common contracture. Many of us who use this term get a lot more recognition of our condition.
We are petitioning the big guys (American Medical Association, World Health Organization and any major hospitals) to please consider adding "Hall's contractures" to the literature they distribute in print or on the web on arthrogryposis multiplex congenita. Thank you.
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