Two PROSE Parents, One Mission
Jean McCawley’s life changed forever one August day in 1994 when she learned about Stevens Johnson Syndrome, an intense autoimmune sensitivity reaction to infections or medications that primarily affects the skin and mucous membranes, including the eyes.
Jean’s ten-month-old daughter Julie lay blistered and swollen in a hospital bed having a rare allergic reaction to medication she had taken to treat seizures. “I was up there at the hospital with Julie day in and day out all by myself. I would have given anything to meet someone else [who could relate].” SJS was so rare that doctors told Jean she would probably never meet anyone else with the disorder. Wanna bet?
Seventeen years later, Jean McCawley is the heart and soul of the Stevens Johnson Syndrome Foundation, a nonprofit dedicated to supporting and educating people dealing with SJS. “I couldn’t let someone else go through it alone. That’s why I did it.” When Julie was diagnosed, Jean could only find one SJS-focused article in a medical library. If you Google SJS today, the SJS Foundation will come up among the top five results.
True to its mission, the SJS Foundation connects patients and their loved ones to information in a variety of ways including with SJS Awareness Month. Since awareness of SJS and its symptoms is thought to be a crucial part of decreasing the severity of an SJS reaction, Jean has been lobbying Governors across the country to proclaim August as SJS Awareness Month, and in 16 states and counting she is succeeding!
It all started with a simple letter asking her Governor to make August SJS Awareness month in the state of Colorado. The help from her father on the wording of the letter must have been just right because much of it was used in that first proclamation that is now the template for proclamations in other states.
Jean is not alone in her desire to support others and spread awareness. Across the country in Maryland, Jill Kleeman’s adult son Brandon was diagnosed with SJS in 2009 after reacting to a medication to treat a basketball injury. After some excruciatingly difficult weeks in the hospital, Brandon was able to go home. However, damage to the epithelial layer of one of his eyes left him severely photophobic, a corneal ulcer was emerging and the need for hourly eye drops was severely affecting his independence.
“I’m constantly online researching ways to help him be more comfortable, connecting with other parents.” Online research is how Jill learned about the SJS Foundation, which informed her about PROSE treatment via Julie McCawley’s success with PROSE. After six months of not working and constant assistance from friends and family, PROSE enabled Brandon to be working again and no longer in need of a constant support. Jill has since become an SJS Foundation support group facilitator and she takes the lead on renewing the SJS Awareness Month proclamation for the state of Maryland.
In conjuction with SJS Awareness Month, BFS held our second annual SJS Kids Week during the first week of August 2011. SJS Kids Week is a pediatric outreach event dedicated to the treatment of complex corneal disease and the emotional support of SJS patients and their families. Julie, Jean and Jill all participated in SJS Kids Week in 2010 and Jill shares that it was, “…one of the best times of my life. It was so therapeutic to talk to others who went through this.”
We are proud to honor Jean and Jill as BFS Heroes!