My Journey

Source:  My Journey    Tag:  arthrogryposis definition
My Journey

Sheree Jenifer Clampit don’t wear it out! I came into the great land of Aus, on 11/03/1994 at 6 Pound 7,  with a rare disability called Arthrogryposis, Multiplex, Congenita. (Arthro-gry-posis), (Multi-plex), (Con-genita) OR, AMC.

There is no simple definition that comes with this disability so I’ll do my best, telling you the meaning of the larger medical terms. 

AMC:  A rare congenital disorder that characterizes multiple joint contractures and can include muscle weakness and Fibrosis, It is present at birth and 1 in 17,000 births are affected in Australia.

Congenital or also known as Congenita, this means a physical abnormality that is present at birth.

contracture is a permanent shortening of a muscle or joint.

Fibrosis: fibrous tissue in the joints

I have the most common of Arthrogryposis where all of my joints are affected, such as; hands, wrists, elbows, shoulders, hips, feet and knees. My fingers are tight from short tendons, so I can’t straighten most of them, my wrists are bent from the same thing, I have limited muscle tissue in my elbows and only a slight bend in my knees, I also have short tendons in my toes.

Of course I can’t remember everything about myself as there is just so much, I STILL have to ask my mum what happened with some of my joints and why they aren’t working properly, you never stop learning about this disability, there is always something that you could miss.

I have had 22 operations in my life, straightening my knees and turning them around the right way by using long pieces of wire that went from my inner leg right to the other side. Having plaster from my waist down was to straighten my hips, as one of my hipbones was and still higher than the other. Releasing tendons in my ankles as I had clubbed feet.

Clubbed feet is when someone’s feet are turning outwards just like being bow legged but the opposite way. Loosening the tendons in my toes, fingers and wrists. My surgeon did put muscle tissue in my left elbow to make it bend, but it never worked out the way he wanted. I COULD go on for ages, but I'm bored.

Family is a word used often...
My Family is the most important, as they helped me in anyway possible and did a good job. My mum and dad were told that I’d never walk, at the age of 2 a surgeon was going to chuck me in a wheelchair and hope for the best, but really, he wasn't the sharpest surgical tool in the operating room. My mum and dad decided that they weren’t going to give up, they spent the next 3 years straining their backs, helping me to walk and because no medical professionals would help, my dads best friend even helped me. By the time it came around for me to start school I was able to walk.

Two years later my sister Natalie was born and has always been awesome! She treats me like she treats anyone else and that’s the way I like it.
About me?
I don't let my disability control me, I control it, I know its not going to go away but I don't let it stop me from the things I love. I'd like to think I'm a nice person, caring, maybe too caring, I can be too generous as well.
I have a good sense of humour  if you had no sense of humor, you would live a very dull life ESPECIALLY if you couldn't pick on yourself, just for a laugh of course.  You can get some people who think the world owes them, now if you have an attitude like that, it's going to be very hard to make friends AND if you don't have a positive out look on life. People say I have an ''I don't care what people think of me'' attitude, but in a good way. It is not everyone else's fault that I was born like this, I prefer to think, everything happens for a reason, even if you don't want it to. I love having fun, and very rarely will I have a bad day. When you are the size of a 5 year old it can be a challenge to not look like a 5 year old but I like challenges. And as it may be a surprise to unintelligent people, I do not like to be pat on the head like a dog or to be called special, because in any context you use it, it just doesn't sit right with me.
I finished my year 11 and 12 at TAFE about 2 years ago, and got accepted to do Certificate IV in Youth Work, but, found out last year that it wasn't my calling due to a serious accident I had at my 18th Birthday, I SWEAR, I was sober! 
I am now moving to Adelaide, South Australia with my partner, where I can see what it's like in the real world and to realize what it's like to do things by myself.  
My view in life is that, don’t complain about what you don’t have, but love what you do have because others are worse off than you.

I am who I am, Sheree Clampit, and I will remain the original me!