Since I was about six months old I started getting this 'rash' starting from my ankles going up to the top of my neck. My mum and dad took me to my local doctor not knowing what it was. The doctors did not have a clue either so they sent me down to Sydney to see the doctors and specialist down there.
They did all the tests they thought were necessary and still could not figure out what it was. There were about seventy doctors coming in this small little room in small groups and to each of them mum and dad had to explain what had happened, but none of the doctors could work out what it was.
This one specialist took my case overseas to see if any of the doctors knew what was wrong with me but none of them could so they just kind of gave up and put me in the pile of unknown cases.
Now my doctor here in Kempsey told me about two years ago that it may be telangiectasia. I have gotten all the information off the Internet and that is what it sounds like. My 'rash' is just like telangiectasia. It is kind of like little red broken-up birthmarks all over my body.
When I am cold the back of my legs go blue and if I am really cold they go like a black color because the oxygen is not flowing through my body properly or something like that.
I still am just like everybody else. I do not have any mental problems or anything and I am very outgoing. I just have a rash and it does bother me. If I had to choose whether to have it or not I would choose not to.
About four days ago, we went down to Sydney. I had been begging mum and dad to take me down there so I can see about laser treatment. So we went to the doctor and she said that it may be on my brain and if it is that means that it could be either eating away my organs or making them turn hard like stone. She does not really think so because I do not have it on my face but I have it everywhere else.
So now in a couple of months I will have to be traveling down to Sydney quite a lot to get a MRI, see a lady about laser, and another doctor about my legs because one seems to be growing faster then the others, and I will need to see another doctor to take special photos.
I am fifteen years old and I am just sick of not being able to wear a skirt or short shorts downtown because I get teased. My mum has always said, "Don't worry about them because you are special and they are just jealous." But that is not it.
I still have a good fun personality and I am always up for a party and I have lots of great friends but I just want to be like everyone else. If I get laser I won't have to be different from everyone else.
I wish that people could just see it from my point of view and see that it is hard for us to have it, and to stop being so childish and teasing someone for something that isn't their fault.
I have never talked to anyone else with the same kind of condition as me and I would really like to. So please contact me on my email address so that we can discuss our problems together. Thank you.
Email: [email protected]
Story edited 03-17-06 JTD
Story posted 06-09-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: