SJS EXPERIENCE: At just 14 I was diagnosed with SJS. It started out with swollen lymph nodes,headache,and a fever. Two days after this occurred I woke up one morning with puffy, swollen eyes, blisters in my mouth, red bumps which started out on my stomach, then rapidly spread to my hands, legs and all other parts of my body. I was rushed to the Emergency room. From there, I was put on steroids which doctors hoped would've reversed the effect and make it stop. This was not the case. I was then transferred to another hospital where pediatrics were accepted to be watched for a few days. By this time my body started developing enormous blisters on all parts of my body. My skin was sloughing off. I was then transferred to yet another hospital. Hershey Med. Center, Hershey, Pennsylvania. By this time my body started burning up right in front of the Doctor's eyes. I was surrounded by at least 4 specialists. My body was at least 70% burns by that time. As time was running short, I was flown in the Life Lion helicopter to Crozer Chester burn center in Philadelphia, PA. The skin on my lungs was also sloughing off and closing my airway. I was put on a ventilator for 4 weeks. I was unable to see, talk, eat, or walk for 5 weeks. I was given 8 mg of morphine and ativan per hour for my 6 week stay at the burn center. Overall, my body was 95%burned. [more]

My name is Mariaelena Berges and I had steven Johnson syndrome.I was really sick when I had Steven Johnson Ssyndrome. How I had steven Johnson syndrome is that I had an ear infection and I took a medicine that I was allergic to but no one knew I was allergic to that medicine. So when I went to the doctors office and when my mom told the doctor about my ear infection they told me that I had to take the medicine again and I shouted don’t give me the medicine but while I was shouting the doctor put the medicine in my mouth and I got more sicker and my color started getting red and hard and by that moment my skin fell of and my mom called the ambulance and by the time I got in the ambulance truck I was out and I burned my eye I was really scared because I thought I was going to die. [more]

Our world changed on September 17 this year. Having 2 FASD/Bipolar adopted children we are used to the chaos and the surprises we get every day. It is a constant battle for "normalcy" and good behaviors. A day without some twist and turn is almost unheard of here. [more]

Danielle Gallo has suffered with SJS and ongoing EM outbreaks for several years. She was on complete bed rest for the last 4 months of her pregnancy and on November 15th gave birth to a beautiful healthy baby boy weighing 7lbs 1oz and 19 inches long.

I got sick when I was three and a half years old. I wonder what it would like to run around and when I see my brothers and sister jump on the trampoline I feel bad for myself. Have you had this before? At school I play with friends sometimes they ask me to run. I always wanted to be a cheerleader and a baseball player and a cook but I was always shaking a lot. When I go to sleep I sometime get sick at night it really hard on me. It hard when I stay up in school because I don't have enough rest. I had a lot of surgeries because I was 99% blind and the doctors told my parents that I would not be able to see again. [more]

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My name is Julie McCawley, I’m 12 years old. I had Stevens Johnson Syndrome when I was 11 months old. I don’t really remember having SJS. I do remember all the things I have been through since. I’ve had lots of doctors appointments for my eyes and ears. I hate the ear appointments the most they hurt really bad. I have had a lot of eye surgeries too. I know that SJS has changed my life. I had two great big blue eyes one wasn’t even foggy looking at all. [more]