The following text may have been generated by Optical Character Recognition, with varying degrees of accuracy. Reader beware!

37 · Friday, May 7, 2010 OAKVILLE BEAVER · www.oakvillebeaver.com Illness toughest to handle when it's a mystery Continued from page 36 couldn't be sure. She'd never encountered anyone so young with the condition. Lupus more commonly hits between the ages of 15 and 24 and is quite rare in children. She referred Jocelyn to a dermatologist and pediatrician, getting us in to see both specialists within a week. The dermatologist was certain it was dermatomyositis (an autoimmune disease with similarities to lupus) or a combination of both conditions. Jocelyn's "butterfly rash" was so textbook for lupus that he asked to take pictures of her to use as an example for his medical students. A few days later a pediatrician ordered more blood tests and a few hours later he had the results -- they showed her muscle enzymes were extremely high -- over 5,000 ("normal" is less than 200). He was on the phone to The Hospital for Sick Children within minutes and got us "fast-tracked." The wait was the longest five days of our lives. The Hospital for Sick Children is a hospital many of us hear about on the radio and see on TV. While we are fortunate to live near this worldclass healthcare facility, walking in to it was rough as a parent. We visited the Rheumatology department, which holds a lupus clinic on Wednesdays. Jocelyn was so weak she needed a wheelchair to make the short trip down the hall for blood work. Her muscle enzyme test was now over 6,000. This meant there might be muscle damage. Regardless of which condition she had, the initial treatment was the same, and Jocelyn needed a high dose of Prednisone to stop the progression. We were warned of the side effects -- weight gain, higher risk of osteoporosis, increased potential for infections as it represses the immune system. Thankfully, they did not need to admit her to the hospital and we could take her home. Our friends and family were very supportive and worried along with us. Jocelyn's sister, Janine, who is two-and-a-half years older, never complained. I think she was worried, too, but never let on. The two played endless board games, watched movies and hung out together. My colleagues at work were very understanding. My husband is self-employed and was able to work around doctors appointments and take turns staying home with Jocelyn. He was the rock while I worried. No one knows exactly what causes lupus. There are theories genetics may play a role, hormones seem to have a link, some type of virus may be a contributor and environmental factors haven't been ruled out. I started to question everything -- were the growing pains she had on and off at night the past few years a symptom of the condition? Did "We were living every parent's nightmare -- our little girl, who dreamed of being an actress was very ill and we didn't know why." Cheryl Fletcher, Oakville resident the sugarless gum she frequently chewed play a factor? Did the new furniture we bought her give off toxins? We are quite certain our Labour Day trip to an outdoor water park and sun exposure all day, probably triggered this flare up. Doctors tried to reassure us we didn't do anything to cause the lupus. Over the winter, my husband made a pact with Jocelyn: if the doctors said she was well enough to play soccer by the spring, he would coach. Jocelyn made significant strides and by March 2009, dad had to follow up on his promise. Jocelyn hasn't had too many side effects from the Prednisone except weight gain -- 24 pounds in six months on her previously 60-pound frame. She had a great soccer season the summer of 2009, scoring five goals. It's believed Jocelyn likely has the milder form of lupus (called discoid lupus erythematosus or DLE) that affects the skin more than the organs. She still goes to Sick Kids every few months for check ups and has to have a bone scan annually as Prednisone leaches calcium from the bones. Her doctors and our family are very optimistic and encourage Jocelyn to be active. She's taking hip hop dance again. And she played soccer all winter. She's ready for the 2010 summer season, with her dad as coach again. I have firmly believed there must be a reason this happened to Jocelyn. Maybe doctors will learn something new about the condition from her. Or, maybe she'll write a screenplay about her experi- ence and act in her own play. Who knows. Jocelyn has dealt with this condition with a wisdom well beyond her (almost) 10 years, only breaking into tears a few times over coming to terms with some of the small limitations she has to live with. She's wonderful about taking her medications every day. We constantly remind (nag) Jocelyn to wear a hat and sunscreen every day. I'm a worrier by nature. I wonder what the future holds for her. Lupus is, in many respects, an "invisible" condition except for when the rashes flare up. The uncertainty of the disease is tough. We are thankful lupus is a condition Jocelyn can live with. We are thankful she has been so strong. When Jocelyn was at her sickest, we found inspiration in the song One Step at a Time and it's true, we live and we learn to take one step at a time. Lupus is a chronic disease with a variety of symptoms. It affects more than 50,000 Canadians. It is not contagious and is not related to AIDS or cancer. It belongs in the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes and scleroderma. Anyone can get lupus and no one knows its cause. : Some people will have only a few of the many possible symptoms. Because it can target any of the body's tissues, lupus is often hard to pin down or diagnose. That's why it is called `the disease with a thousand faces.' Lupus symptoms include joint pain, a red rash across upper cheeks and bridge of the nose; extreme fatigue, an unusual reaction to sunlight, a red scaly rash, small, painless sores in the mouth or nose, chest pain, swelling, seizures or psychological problems, abnormalities in blood chemistry. For more information about lupus, visit www.lupuscanada.org. S ring Clean Up p RE-CONDITION, RECYCLE, AND RE-USE: SAVIS recognized for its work The Halton Multicultural Council (HMC) recently recognized the Sexual Assault & Violence Intervention Services of Halton (SAVIS) with its first annual Bill Allison Community Leadership Award. The award was presented by founding HMC president Bill Allison on April 24 at HMC's annual fundraising gala -- Halton Meets Latin America held at the Operating Engineers Banquet Hall in Oakville. "We are extremely proud of the team at SAVIS and this feels amazing to have our efforts publicly recognized," said SAVIS Executive Director Jacqueline Benn-John. "Implementing our mandate has been a challenge when addressing the topic of sexual violence as it is portrayed with much negativity and victim blaming myths so you can imagine how challenging it has been to address equity and access for all sexual violence survivors." "SAVIS adapts its programs and services as needed to meet the needs of Halton's dynamic and increasing population," said Joanna Matthews, HMC executive director. May is sexual violence awareness month. To recognize it, SAVIS in partnership with the Ontario Coalition of Rape Crisis Centres, is supporting the launch of the new Ontario Coalition of Rape Crisis Centre (OCRCC) improved website. The website at www.sexualassaultsupport.ca, was designed by OCRCC members and funded by the Ontario Women's Directorate. For more information, contact SAVIS at 905-825-3622 or savis@savisofhalton.org. · All Outdoor Furniture · Trellises & Urns · Cottage Furniture · Garage Sale Finds · Stored Furniture · All types of doors As seen on CityLine $25 off with this ad (Minimum $250 order) 905-631-REDO (7336) www.paintitlikenew.com #1A-1254 Plains Rd. E., Burlington, Ontario 10 am - 5 pm Tuesday - Saturday ¡ CLIP & SAVE ¡ ¡ !! ¡ ¡ ¡