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What Is Arthrogryposis Multiplex Congenita?

Arthrogryposis (“AMC”) is a condition someone is born with. Each case is unique, as some people may be affected more than others. It's a term that describes someone born with multiple joint contractures (fixed and stiff joints) and covers a wide range of conditions. It is not a medical diagnosis but a description of a limitation of movement of two or more joints in different areas of the body. The joint may be fixed in either a flexed (bent) or extended (straight) position.

 

In some cases only two or three joints may be affected but in others all joints, including spine and jaw, are involved. Arthrogryposis is a non-progressive condition but as the child grows and develops there may appear to be changes because the affected limbs are not as active and do not grow as much as unaffected limbs. The majority of children with Arthrogryposis fall within the usual range of intelligence; however, a few may have learning difficulties.

 

Arthrogryposis occurs in about one in every 3000 to 5000 live births.

 

 

 



 

How Does Arthrogryposis Affect me?

 

I am affected by muscles that haven't developed properly, *clicky* knees and hips, a stiff right elbow, and a severe curvature of the spine (everything from the neck-up was not affected). This means I rely on a wheelchair for mobility, are not able to lift my arms (though I do have very limited use of my hands - e.g. I can use the computer mouse), and adopting a slightly odd posture when sitting (due to the twist in my spine).

None of this causes any pain, which is why I hate the term "she suffers from..." - I don't! In all honesty, the only time I ever suffer is when people talk to me like I'm in a pram rather than a wheelchair – though some of my close friends may disagree, I do have a brain (and I think I know how to use it!).

 

How Do I Keep My Independence?

I use my wheelchair to get around -- lack of access can be annoying; however, I have some great (and strong) friends who have helped me into a lot of places (and to whom I am eternally grateful!      ).

For everything else?... Well, I pretty much use my mouth to perform most everyday tasks; the tasks I can't do I have Personal Assistants for -- but who wants to do the washing-up anyway?!       (seriously though, I need help with things like getting dressed, washed, etc – which is why I need my PAs with me in Africa).

I use a stick in my mouth to type... I hold a brush, pen or pencil in my mouth to paint, draw, or write (I had a note-taker at School/College/Uni because I can't look at the board and write quickly at the same time, and writing a lot gives you neck-ache!).

I train my dogs (and other animals) by tying a clicker around my neck with a string and pressing the button with my chin (I can use my hand, but its more difficult to do when its cold because my muscles don’t work as well), I reward my dog by either using the stick in my mouth to move my hand so i can pick up treats, or just holding the treat in my mouth (what's good enough for them is good enough for me!      ).

I can drive a horse and carriage by wrapping 'loop-reins' (they look like 2 leather dog leads) around my wrists.

I can use my SLR camera thanks to a great gadget invented by Brian (from REMAP).

Anyway, I could go on – but wont ...       But I can safely say my neck and jaw muscles are my strongest! (I can even play a tug-o-war game with my lovable mutt JD – if you haven’t guessed, she’s named after Jack Daniels!      ).