Skye: Localized Juvenile Scleroderma
I've gotten six IV's in my life, had surgery, cried, and thought I was going to die.
My story begins with me being in fifth grade, out on Father's Day with my dad and sister. It was in June on Father's Day that we went to my old school and were flying a remote control airplane. I remember the plane having flown over a fence and my dad asking me to go get it. The first time I walked around the fence but then coming back I stabbed my foot and got a stick stuck in my foot.
The next few days after I started complaining about my foot being sore and it hurting, I noticed it becoming discolored and a tad larger. At the time it was only my right foot/ankle. After weeks of complaining to my parents that my foot looked larger and was discolored my mom noticed it being bigger and discolored so she called my dad at work and told him. They then brought me to the doctors to be told that I had just sprained my ankle and it was swollen so it should go down.
After a couple of weeks my family and I were moving so we moved to my new house and it was almost time to start sixth grade. We had gone away on a hiking trip. I had told my parents that day that I didn't feel very well, and that I was sleepy. I was walking the trail when I suddenly looked pale and then I just threw up on the side of the trail. My parents took me home.
After weeks of going to school, one weekend it got bad to the point where I lost too much weight, I wasn't eating, and I had high fevers. I had four nose bleeds in one day, and I also had internal bleeding. My parents took me to the doctors and they said for me to go through a bunch of different test. Each test showed that I had swollen in my ankles and that It looked like I had a sprained ankle. No one thought I had scleroderma.
After weeks of being in my bed sick, the doctor called and told my dad I was to be admitted to the Sudbury hospital. They also said I had to start eating or else they are going to shove a tube down my mouth and make me eat. I started crying. I didn't want to be in the hospital, and I sure didn't want a tube down my mouth. That night my dad packed my bag, and drove me to the hospital. Later that night my mom and sister came to the hospital. My mom told me that she would stay with me that night, and come with me to all the tests I had to do the next day. After all the tests were done my doctor said that I had gained one pound and was allowed to go back home. It was a lie. I hadn't gained any weight at all. Still not knowing what I had I went home and suddenly got better. The doctor said I was well enough to go to school so they put me back in school for half days only.
After a month or so, it came back. My right ankle got swollen. Then my left. I wasn't eating. I wasn't walking. I had high fevers. This time my doctor said I was to be admitted to Ottawa CHEO (Children Hospital Eastern Ontario).
I got a great doctor. He said I was to stay there for a whole week, and do a bunch of tests. After doing the tests they said they think I had Scleroderma Morphea. They said I had to get IV's, every six months, they also said I needed to take a shot that held methotrexate.
When I came for the first month, my doctor said that I had a certain kind of scleroderma that was uncommon in children and that I had a type where it didn't change. Which meant that it wouldn't jump from my ankles to my heart or something.Well, now I've done the six months. I've gotten six IV's in my life, had surgery, cried, and thought I was going to die. But now after four years of suffering through this I am getting better. I now only need to take that needle for six more months. My skin is coming back, and I can walk. I am a healthy weight, and don't have any fevers. I still can't do sports with running because of what I have, but at least I am living my life healthily.
I am now in eighth grade and I am happy to say that having gone through this is something that shows I got it bad but being in a hospital and seeing other kids with way worst things, tells me I am not the only one so I better suck it up and live with what god gave me.
To Contact the Author
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
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