Julie's Story

My name is Julie . When I was 11 months old I had SJS/TEN. I was burned over 80 percent of my body. I spent 27 days in the burn unit. I thank God every day that I was too young to remember, however I do remember all the things that happened afterwards.  I know that SJS has changed my life a lot.  Sometimes I wonder what my life would be like if I didn’t have it.

 

I'm blind in my right eye and I have low vision in my left, which changes all the time. I can go from seeing fine to not being able to see at all in a matter of minutes. I have photophobia which means that light really hurts my eyes. I wear sunglasses and a hat all the time. I also use eye drops because I have dry eye syndrome. I’ve had  12 eye surgeries. I've had too many doctors’ appointments for my eyes and ears to count. I hate the ear appointments, they're very painful. When I was really little they would have to put me to sleep for the ear appointment.

 

I've had a hard time in school. It's been hard for me to make friends. Kids have always made fun of me but now I have some friends that are much more mature and they like me for who I am. Since my Mom runs the Stevens Johnson Syndrome Foundation I have had the opportunity to meet a lot of people that have had SJS and TEN. I feel very lucky to have met them because they understand me. I met my first SJS friend when I was 18 months old and have met many others since. I can’t say I like SJS because it is not a fun thing. Many people have died from it. I am glad to be here with my family. I know that I almost died and God had a reason for me to be here. I'm a very lucky person. Every night my little sister and I pray for everyone that has had SJS or suffering with it right now to get better.

 

 

The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart. -Helen Kelle