Hall’s Contractures

You all know my kids have arth……osis something or other, right? We also call it AMC for short, like the movie theatre. So try Googling it and you’ll get the movie theatre. In fact I Googled AMC because no one can spell arthrogrywhatsis and the first entire page was all movie stuff. Page two had American Mathematics Competition. Awesome. AMC.org is cancer-related. Did you mean Appalachian Mountain Club? Google wondered on page three. Army Material Command? Air Mobility Command? Aids Malignancy Consortium? Allied Media Conference? American Music Center?

To help Google out I put in “AMC medical” so now it’s looking for medical conditions. I got American Medical Concepts, several Animal Medical Centers, Albany Medical Center, Atlanta Medical Center, SoCal AMC (if you want some weed), American Ambulance Service… and eventually Arthrogryposis Multiplex Congenita. (That’s how you spell it!)

Arthrogryposis comes from the Greek. It literally means arthro=joints, gry=crooked, posis=a condition. (You probably know this from the What is Arthrogryposis? link on the side of this blog.) Mulitplex means in multiple locations. Congenita means “from birth.” So AMC literally means a crooked joint condition in multiple parts of the body that you get from birth.

Some days I hate that I can’t tell most professionals my child’s condition 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, etc. These are all people who work with kids with disabilities! Try telling the average person on the street and you just get a funny look and a step back.

Today we played a little game on Facebook called name that condition! Wanna play? Name that condition! These are the real names of a bunch of diseases and conditions that got named something more pronounceable and more memorable later on.

1. Regional Enteritis
2. Reduced Synthesis of the Neurotransmitter Acetylcholine (my aunt has this)
3. Nontropical Sprue (an orphan from my newsfeed has this, he got a family!)
4. Varicella (I had this)
5. Borrelia burgdorferi
6. Epidemic Parotitis (both kids had this shot)
7. Hypokinetic Rigid Syndrome (my grandpa had this)
8. Osteomalacia (my friend has this)
9. Ascorbic Acid Deficiency (pirates have this)
10. Gastroenteritis (that one December my whole family had this)
11. Toxic Epidermal Necrolysis
12. Medial Tibial Stress syndrome
13. Hemagglutinin Type 1 and Neuraminidase Type 1 (remember the media buzz around this?)
14. GM2 gangliosidosis or hexosaminidase A deficiency
15. Maladie Des Tics
16. Acute or Chronic Nephritis (this has a cheery name)
17. Gonadal dysgenesis
18. Arthrogryposis multiplex congenita

The answers were easy to pronounce and I’ve heard of all but two of them… but even those two I can pronounce easily! 1. Crohn’s, 2. Alzheimer’s, 3. Celiac, 4. Chickenpox, 5. Lyme disease, 6. Mumps, 7. Parkinson’s, 8. Rickets, 9. scurvy, 10. Stomach Flu, 11. Stevens-Johnson syndrome, 12. shin splints, 13. Swine Flu, 14. Tay-Sachs, 15. Tourette’s, 16. Bright’s disease, 17. Turner syndrome and of course 18. that one condition both my kids and lots of our friends have that no one can pronounce.

So your condition is super hard to say and look up! So what?! What’s the problem?

Here’s the problem: Research. Funding. Long-term studies.

Something I learned at the AMC conference totally bothered me. 1 in 200 people have a joint contracture. ONE IN TWO HUNDRED! That’s more common than spina bifita, muscular dystrophy, cerebral palsy… you know, conditions you’ve actually heard of! If something is this common why aren’t there more grants out there for it? Why aren’t more people studying it? Why isn’t there a study on the long-term effects of these surgeries my kids need? Why isn’t there more research on joint replacement surgeries? Why don’t my local doctors know as much as Dr. van Bosse in Philadelphia and so I have to drag my whole family 3,000 miles to get the help we need?!

Sure having multiple contractures (or having at least three contractures in at least two parts of the body, a.k.a. arthrogryposis) is less common (1 in 3,000), but we don’t care if you study one contracture or study them all! Just study them!

I truly believe that our biggest problem is that we’re not memorable. Kids with arthrogryposis have been all over the news. I get updates every time someone is mentioned in an article or on TV. And it’s often. Two of our friends with AMC are published authors who wrote books about their condition! One gal was just in the paper. One more on a billboard for AMC awareness day! We’re out there and all over, but no one can remember that long stinkin’ name!

So I’m sorry, I know this will be unpopular for some of my AMC family, but for the sake of our future and our funding and research I declare a need for re-branding!

  • Imagine if people with amyotrophic lateral sclerosis were just happy to have that long diagnosis. At one point they called it ALS for short. Did that make it better? No. Did that get them funding? No. But who hasn’t heard of Lou Gehrig’s disease? It’s the same thing! Only with a public awareness like no other!
  • “I’m sorry but we prefer to call it amyotrophic lateral sclerosis.” Said no one ever.

So what do I suggest?

What step should we take?

What should we call it?

All good questions.

I would like to call my kids’ condition “Hall’s contractures.”

Most people I know can remember and can say “contractures.” Plus the word contracture is very descriptive. And “Hall’s” is to honor Dr. Judith Hall who has devoted over 40 years of her life to studying and typing AMC. She is the undisputed arthrogryposis research queen. If it weren’t for a grant she received in the 1980s a lot of us wouldn’t know what our kids have. She is retired but is still on the AMCSI board, still attending conferences, still helping parents and still doing research into arthrogryposis!

Hall’s contractures. I just like it. Hall’s “condition” is some mathematics thing having to do with Hall’s theorem so that’s taken even though I kinda like it better. We can do that too! I don’t care. Just something!

I dream of a world where someone asks, “What do your kids have?” And I answer, “Oh they have Hall’s.” And the person nods and smiles and has at least heard of that. My bigger dream is that “Hall’s” gets lots of money for research into common and multiple contractures and their effects on the body long-term. And there are still kids out there with arthrogryposis (Hall’s!) who don’t know their type and are big mysteries. Let’s get more funding! Let’s get more research! And let’s rebrand this condition until everyone has heard of it!

 meddic

 

9 Responses to “Hall’s Contractures”

  1. Cheryl says:

    I’m in!!!

  2. Alyssa Hyde says:

    LOVE the idea! No matter how many times I say arthrogryposis everyone always say arthritis. “Halls”. I like it. “Hall’s syndrome?” Im not sure. That would probably work best for our distal arthrogryposis kiddos.

  3. admin says:

    There’s already a Pallister-Hall syndrome (also named for Dr. Hall) which is why I went with Hall’s contractures. I like having the word “contractures” in there because that’s specifically what needs the funding and it’s more common. But I like syndrome too! Or condition!

  4. Anonymous says:

    I like it! How do we actually do this?

  5. Anonymous says:

    I like it… :-)

  6. Sarah Langston says:

    You are so right on so many levels!! This is a great idea!

  7. Gayle Greene says:

    Yes, something easy and descriptive of what the condition is! Even my close friends and relatives can’t remember Arthrogryposis!

  8. jessie hughes says:

    It’s kind of funny because Stuart is a consultant with AMC – the cancer one. =) But I love it – Hall’s. I say send out a mass email and let people know that’s what it’s called now. It’ll catch on, I’m sure. But until then, I will say I know how it’s pronounced thanks to you. And secondly, have you seen the Aladdin show at Disney’s CA? I’m thinking one of the actresses in that show as arthrogryposis.

  9. Patricia says:

    Did you try googling “Hall’s contractures”*? It ALREADY comes up with all-relevant pages — in part because “contracture” and “Hall” occur together all over.

    *I kind of suspect you did, because you’re smart like that — but if you didn’t, I’m way impressed anyway by how canny you are in your selection of terms.

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