Michelle Obama Aware of SJS

Denver, COJean McCawley, founder of the Stevens Johnson Syndrome Foundation, must be a very proud parent. Her daughter, Julie McCawley, 16, had the opportunity to discuss Stevens Johnson Syndrome (SJS) with Michelle Obama last week when she shared a table with the First Lady at a Governor's Mansion luncheon.


Also in attendance at the luncheon at the Governor's Mansion were Cabinet secretaries, an astronaut, actresses, two members of Congress, and 80 other Denver-area high school girls. Obama encouraged the girls to not only seek mentors, but to fill that role themselves.

Clearly, Julie McCawley already got that message. She barely made it passed her first birthday: after being prescribed Phenobarbital, an anti-convulsant, to control seizures, she suffered a severe allergic reaction to the drug—Stevens Johnson Syndrome—that left her blind in her right eye, photophobic and scarred for life. Now a junior at Westminster High School, Julie has designed and created her own SJS website to support other kids with the disease. [Michelle Obama] was amazed by it," Julie said. "She had never heard of something like this before, and she asked if she could keep the fact sheet."

Nearly all cases of Stevens Johnson Syndrome are caused by a severe adverse reaction to a drug, including the following:

- Ibuprofen (Advil, Children's Advil, Motrin, Childrens Motrin and Nuprin)
- Ketek, an antibiotic
- Dilantin, an anticonvulsant
- COX-2 inhibitors Bextra (Valdecoxib),Vioxx (Rofecoxib), Celebrex (Celecoxib), and Non Steroidal Anti-Inflammatory Drugs (NSAIDs) including Daypro (Oxaprozein)
- Non Steroidal Anti Inflammatory drugs such as Feldene (Piroxicam), Naproxen (Aleve)

Adverse drug reactions account for approximately 150,000 deaths in the U.S. alone, making drug reactions the fourth leading cause of death in the United States. People with SJS or toxic epidermal necrolysis (TEN) are hospitalized, usually in a burn unit, and are given the utmost care to prevent infection. In SJS/TEN, blisters break out on the mucous membranes lining the mouth, throat, anus, genitals, and eyes. The eyes may swell and become so filled with pus that they seal shut, potentially scarring the corneas. The urethra may also be affected, making urination difficult and painful. Sometimes the mucous membranes of the digestive and respiratory tracts are involved, resulting in diarrhea and difficulty breathing.

Skin loss caused by TEN is similar to a severe burn and is life threatening. If the patient survives, the skin grows back on its own, and unlike burns, skin grafts are not needed. Fluids and salts, which are lost through the damaged skin, are replaced intravenously.