Misdiagnosis can lead to a delay in treatment -- and even death.
Raising awareness with the medical community and the general public is critical, says Jean McCawley, founder of the SJS Foundation.
McCawley started the foundation shortly after her daughter Julie, then 11 months old, was diagnosed with SJS in 1994. Julie survived, but suffered serious damage to her eyes.
At the time of Julie's diagnosis, McCawley, who lives in Colorado, could find no information about SJS.
"I decided then that I could not let another parent go through it alone," she says. "I had to take what happened to her and turn it around."
The foundation offers a network of support groups and opportunities to connect and find information about SJS.
To learn more, visit sjssupport.org, email firstname.lastname@example.org or call 303-635-1241.
-- Mary Beth Schweigert