Name : Janelle Carr
E-mail : carr_nelle@hotmail.com
Adult: 20 years old
Location: Perth, Western Australia
Areas of body affected: Left shoulder, arm, wrist and hand
Personal History:
Well to start with I was born with this disorder. The doctors noticed straight away as my left hand was bent all the way back to my forearm. At the time they did not know what it was and said I was too young to be able to tell or have surgery. It was not until years later (1990) that a doctor called Bill Gilmour diagnosed me with Melorheostosis. He still wasn't sure that it was that, after all the x-rays etc. To this day I am still not sure if the disorder I have is Melorheostosis or if it is something else. I will probably never know. Living in Perth, in Australia, it is a bit difficult to get information or to go to any doctors because the resources are just not there. I do lead a normal life, I play a lot of sports and there are not many things that I can't do. I cannot touch my shoulder or turn my left hand so it is palm up. Two of my left fingers (pinky and one next to it) are slightly bent and I cannot make a fist (close my hand). My left hand is smaller then my right hand and my left arm is a considerable length shorter than my right. I do not get any pain from this disorder but everyday if my hand is not in use, gets numb and is quite discomforting. I guess it is something I have learned to live with and my parents have not made a big issue out of it, so I was able to live a normal childhood, with only a few differences like not being able to play many instruments and sometimes a few difficulties when playing sports. I have not let it get in my way, so that is why not until now I have bothered to find out about it. I was in a car accident a while ago (2 years), now I'm left with a bad neck and back. The doctors are wanting to know about my left arm disorder to see if this has anything to do with my constant pain and why I'm not getting better. It is good to find a site like this and be able to tell people about my disorder who know what I'm talking about. I guess I'm lucky because I could be a lot worse off. I'm still living a normal life, but it would be nice to know if there is anything I can do about it. I haven't tried any surgery because no doctors really know much about Melorheostosis and I don't want to end up worse off. If anyone can give me some information, which I know will be difficult, because I am in Australia, so hopefully there are more people that will come to this site that live in Australia, that can help me about surgery or anything else.