Jean McCawley, Founder
Stevens Johnson Syndrome Foundation
Julie McCawley, Founder
Tel: 303 635 1241
STEVENS JOHNSON SYNDROME WEBSITE FOR KIDS LAUNCHED BY JULIE MCCAWLEY
14-YEAR OLD SJS VICTIM CREATES SJSKIDSSUPPORT.ORG TO HELP KIDS LEARN MORE
ABOUT SEVERE ALLERGIC REACTION TO PRESCRIPTION AND OTC DRUGS
Denver, CO (June 16, 2008) -- The Stevens Johnson Syndrome Foundation (www.sjsupport.org) is pleased to announce the launch of www.SJSKIDSSUPPORT.ORG which was designed and created by 14-year old Julie McCawley, a victim of Stevens Johnson Syndrome. The purpose of her website is to educate the public about Stevens Johnson Syndrome (SJS) from a child’s point of view. SJS is a severe allergic reaction to prescription and over-the-counter medications. Those afflicted with SJS experience severe inflammation of the mucus membranes and, if left untreated, SJS can result in blindness, other serious health problems, and death.
Too many parents have contacted my mom over recent years,” explained Julie McCawley, “to talk to her about their own kids who, like me, got Stevens Johnson Syndrome. I’ve become friends with many of them and we always talk about our struggles to cope with SJS and the ongoing problems that we have because of it. These conversations inspired me to build a website that would speak directly to kids.”
The SJSKIDSSUPPORT.org website uses cartoons and plain language to talk about SJS, and I think that their family and friends will like it too,” said Julie. “I hope that it gives healthy kids some insight into why SJS kids may look different on the outside or why many of us are so sensitive to the sun, but that we’re the same on the inside. Then, maybe the next time they meet a person with SJS or any kind of disability, they will be more tolerant of someone who’s not exactly like them.
I also made this website to honor the kids who have died from SJS,” continued Julie, “and I have a special section to keep their memories alive. The idea for this really is an extension of a special bulletin board that I keep at home that has the photos of children who have died from SJS. Their beautiful faces and tragic stories remind me that we need work harder at educating everyone about the dangers of SJS.”
When she was only 11-months old, Julie McCawley became a victim of SJS and only has vision in one of her eyes. Her mother, Jean McCawley, established the SJS Foundation in1995 to provide the public and medical communities with information about adverse allergic drug reactions, and to serve as a support group for victims of SJS and their families. Today, the SJS Foundation sponsors active support groups in 18 states, and through its Yahoo support groups (http://health.groups.yahoo.com/group/sjskidssupport, and http://health.groups.yahoo.com/group/StevensJohnsonSyndromesupport)
serves adults and children afflicted by SJS from around the world, including Australia, Canada, Europe, Mexico and South Africa.
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