Beasley, Allen, Crow, Methvin, Portis & Miles, P.C.

About 300 people in the U.S. are diagnosed with Stevens-Johnson Syndrome (SJS) each year. It is a serious and life-threatening disorder often caused by an allergic reaction to prescription and over-the-counter medications, and it can affect people of all ages, including children. Those afflicted by the disease experience severe and often painful inflammation of the mucus membranes and, if left untreated, it can result in blindness, serious health problems, and death.

Julie McCawley became a victim of SJS when she was just 11 months old. Her mother, Jean McCawley, established the SJS Foundation in 1995 to provide the public and medical communities with information about the adverse allergic drug reactions and to serve as a support outlet for victims of SJS and their families. Today, Julie is 14 years old and as a result of SJS has lost vision in one of her eyes.

Last August, Julie designed a Web site to help educate the public about SJS from a child’s perspective. The SJSKIDSSUPPORT.org site uses cartoons and plain language to explain the disorder. “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,” Julie says in a recent press release.

The Web site also honors the memory of children who have lost their battle with SJS. “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,” she adds.

Julie’s story can be found on the Foundation’s Web site at www.sjsupport.org. The SJS Foundation sponsors active support groups in 18 states, and through its Yahoo support groups serves adults and children afflicted by SJS from around the world, including Australia, Canada, Europe, Mexico and South Africa.

This entry was posted on Wednesday, December 3rd, 2008 at 8:00 am and is filed under News. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.