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www.oakvillebeaver.com · OAKVILLE BEAVER Friday, May 7, 2010 · 36 Living Oakville Beaver LIVING EDITOR: ANGELA BLACKBURN By Cheryl Fletcher SPECIAL TO THE BEAVER Phone: 905-337-5560 Fax: 905-337-5571 e-mail: ablackburn@oakvillebeaver.com Youth battles disease of a thousand faces May 10 is World Lupus Day In March 2008, our eight-year-old daughter was on top of the world. Jocelyn wanted to be an actress since she could talk and had placed second in a model search over spring break. In August, she ended one of her best soccer seasons. However, just after starting Grade 3, she complained her legs were sore. At first my husband Graham and I didn't think too much of it because Jocelyn often had growing pains when she was younger. However, she also seemed to have a perpetual sunburn on her arms and face, despite her insistence she was wearing her sunscreen. I started to realize something was not normal when, on her second week of hip hop dance class, Jocelyn said her legs were too sore to dance. I told her if she was feeling that bad I'd take her to a walk-in clinic right away and she said yes, "Please take me to a doctor." I knew she wasn't faking. She was prescribed cream for her sunburn-like rash. We made an appointment with our family doctor for the following week. In the meantime, Jocelyn came home from school crying. She said it hurt to climb the stairs and the kids were teasing her. Her school immediately agreed to move her to a Grade 3 class on the main floor. I visited both her old class and new one to explain why their friend and classmate was moving classrooms. I didn't even understand, so how could I explain it? I told them Jocelyn had sore legs and we were taking her to see some doctors to try and find out why.) I broke down into tears in the principal's office at Our Lady of Peace School; she was very sympathetic. Jocelyn missed several days of school and had to drop out of dance class. It became increasingly I KAREN NEWMAN / OAKVILLE BEAVER BACK IN THE GAME: Jocelyn Fletcher is happy to be back playing soccer on her U10 Nerds on Site-sponsored team for the Oakville Soccer Club after being diagnosed with lupus. clear something was seriously wrong. Her usual boundless energy gave way to extreme fatigue. Most days she needed us to lift her out of bed in the morning. Her legs would buckle as she got out of the car and we took a step stool everywhere. We were living every parents' nightmare -- our little girl, who dreamed of being an actress was very ill and we didn't know why. Our family doctor ordered several blood tests. The first wave came back normal. Later, our doctor called me at work with news the tests showed a positive ANA (anti-nuclear antibody), an indicator Jocelyn had something autoimmune in nature. I spent hours that night looking up autoimmune disorders on the Internet. Given the sun sensitivity, the "butterfly" face rash (covering the bridge of the nose), and muscle weakness, the doctor's first thought was that it might be either lupus or dermatomyositis, but See Illness page 37 was scared when I couldn't walk up the stairs. I remember asking my Mom if I was going to end up in a wheelchair. When the doctors told me I had lupus, I didn't know what it was. I felt like I wasn't myself anymore. I thought that people would look at me differently. When I changed classrooms, I didn't know if the students would understand why I had to change. My mom came to the class to explain. It was hard for me to explain to all my friends what I was going through. They would ask if I was hurting or what I was feeling and what lupus was. Most of my friends thought lupus was contagious and they thought they'd catch it. I told them they had nothing to worry about. When I went to Sick Kids, I didn't feel as scared because I knew I'd be taken care of. When I saw the other children who had more life-threatening diseases, I realized my condition wasn't as bad. Once I got on the medication, I could tell it was working. I'm happy I can play soccer and do dance again. I've been living with this for almost two years now. I have to be careful in the sun and make sure I'm wearing sunscreen and a hat. All of my friends and teachers have been very supportive. I want people to learn more about Lupus so I want to share my story. I'm going to sell some of my old books, and lemonade, at our garage sale in May to donate for Lupus research. Jocelyn Fletcher, 10, Oakville