Arthrogryposis Multiplex Congenita

What Is Arthrogryposis Multiplex Congenita?

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Arthrogryposis 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

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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 am 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 I adopt a slightly odd posture when sitting (due to the twist in my spine). I rely on a wheelchair for mobility, Personal Assistants for physical assistance, and special adapted equipment for everything in-between. 

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I hate the term "she suffers from…”, because I don’t! Having a disability does not 

necessarily mean you suffer; it’s all about perspective. Do I have  struggles in life? Of course; but then regardless of disability, who can honestly say they don’t? 

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In all honesty, there are only two instances in which I consider myself to actually suffer:

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The first is when people talk to me like I'm in a child’s pram rather than a wheelchair – I do (shock horror) have a fully functioning brain!  

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I’m just human like you, and I don’t bite (often). Don’t be afraid to politely ask me questions, don’t be afraid of how you phrase things, don’t pull your child away when they have a genuine interest and want to ask me something (even if it seems like a silly question) - anyone who knows me will tell you that I will happily oblige. I believe education and understanding is the key to better facilities and equality, which is why I’m always very open; no one should ever be punished for curiosity and wanting to learn.

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The second (and I’m sure fellow wheeley-folk will agree with me here), is the fact that the disabled are often viewed by *the powers that be* (aka. most governments and other officials) as a hindrance - in the sense that every piece of specialist equipment I require to maintain my health, every second of care I require to live a *normal* life - and whatever else we need - has to either be fought for or funded ourselves; this isn’t fair. Yes, sometimes we win, but the point I am trying to make is, if it’s needed, you shouldn’t have to fight for it. 

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I fought for years to receive the 24/7 care I needed to live my life independently in my own home. Why? Because it’s cheaper to place me in residential care. It’s not that I have anything against such places, they’re just not for me personally. I want to live my life the way I choose, like anyone else. No one’s life should EVER be measured by what they cost to keep financially; disability is not a choice. Quality of life and maintaining health (not just physical, but mental health too) - that’s what is important. If we start enabling disabled people, rather than viewing us as a financial drain, the vast majority can actually contribute positively to society.

do not grow as much as unaffected limbs. The majority of children with Arthrogryposis fall within the usual range of intelligence.

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How Does Arthrogryposis Affect Me?

How Do I Keep My Independence?

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I use my wheelchair to get around - lack of access can sometimes be annoying; however, I have great (and strong) friends who have helped me access a lot of places and things I never thought I would - and to whom I am eternally grateful!

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For everything else - I use my mouth to perform most everyday tasks; the tasks I cannot do I have Personal Assistants for (such as getting dressed, washed, passing a drink, 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.

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I train my dogs (and other animals) by tying a clicker around my neck with a string and pressing the button with my chin, or I use my voice. 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!).

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

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I use my SLR camera thanks to a great gadget invented by Brian Rylance at the charity REMAP.

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There is always a way do do the things you want to do, it’s just a case of using a little imagination and stubbornness! If there isn’t something already available out there, then innovate and create - or find people who can! My most favourite challenges are often those which people have told me I cannot do.

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