In 1998, I was eight years old and I seemed to keep banging my leg on the kitchen table when ever I tried to sit down. I bruised on the shin of my left leg but we knew it was not from banging on the table. So my mam brought me to my local doctors. There, he asked had I sat near a fire and maybe burnt my leg. (I did not think he was going to get anywhere with this!) so he sent us to the children's hospital near my house.
The dermatologist I had there was very quick at suggesting maybe it is scleroderma. She photocopied a few pages from a book for my parents to look at and gave me some type of moisturizing cream for it.
I went to the hospital every few months for about two years. I got blood tests taken and an MRI. They showed us the X-ray images of the muscles, and we could see they were a slight bit different than my right leg.
Then we suddenly just stopped going to the hospital, and I almost forgot I had scleroderma. It was not causing any pain back then.
In the year 2006, about seven months ago, my leg started to pain a lot and I felt it get weaker at the knee. I had never really known what scleroderma was. But when the pain started I got so annoyed and wanted to know why. So I got onto the internet and looked up "scleroderma". I think I looked at almost all the web sites I could and I was very surprised to find out everything about scleroderma, because I never knew any of that information before! I figured out what type I had, (linear). And I looked at all the other different types too. I got a bit of a fright when I read about scleroderma effecting the organs.
The next day, my leg was really paining me for most of that day, so I mentioned it to my mam. I said, "Did you know scleroderma is a type of arthritis?" She paused and looked annoyed, but scared too, and said that she did know. She had not wanted to tell me anything about scleroderma in case I got frightened.
After that, I did not talk to her for a few days because I was annoyed that my parents had known for all those years and just did not bother telling me. I found out that they even went to the scleroderma association meeting that was held in Ireland one day. But I decided to forgive her after a while and we were talking within a day.
My mam brought me to our local doctor and he basically was upset at us for not going to the hospital regularly. He frightened me a bit because he kept saying that this disease can worsen if you do not keep getting it checked out. He referred us to my old doctor in the hospital, and she checked up on me and sent me to a rheumatologist a few weeks later.
The rheumatologist did a good job and checked my symptoms and made sure I was not in pain anywhere else at the time. She also listened to me when I talked about my hands being very cold all the time. I had twelve tubes of blood taken that day!
Then we booked our next appointment for a connective tissue day, which was with about six doctors. That day was not very helpful. My doctor just mentioned that day was the day we would focus on if I needed treatment. But that was the last I heard of it. She booked me in for a biopsy.
I had my biopsy on October 31st, this year, and the doctor did two on my thigh because he was not sure where he should do it. The doctor explained why he was doing a biopsy, as me and my mam did not really have a clue. He said it is to make sure it is linear scleroderma I have so they can try out some treatments. He mentioned something about light treatment. But I do not know yet what type of treatment they will give me.
I am still waiting on an appointment at the hospital again for the results of the biopsy and to find out what further treatment to get.
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Story edited 11-20-06 JTD
Story posted 11-27-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.