My 4 Year Battle With Steven Johnson Syndrome
In the week leading up to my outbreak I developed on the left side of my neck a full but persistent ache. Coughing and flu like symptoms as well. I awoke during the night with a funny looking bruise on my right palm, and being a teacher I had some children with Hand Foot & Mouth. I took myself over to our local Hospital at 1am leaving a note for my husband to where I was. At 5.00am he came to the Hospital to see me, & during these 4hrs I had become very sensitive to bright lights, my eyes red raw & very painful along with purple blotches on my face, hands & feet which were burning and so painful, a pain I had never experienced before in my life. I was given ice to hold which was melting, I was run through a series of blood tests, with no answers except to tell me I also had micro-plasma pneumonia, however, they did not know what else was wrong with me. Over the following week I did not get any better in fact I got worse my skin began to crack so deeply I was constantly sedated with morphine due to the intensity of my pain. I had severe pins n needles & migraine headaches. After the second week & photos taken of me my Doctor walked in & told me I had SJS... How did I get this & what is it?? He told me what it was however could not tell me how I got it.
Since then I have had it for the past 3 years at least once a year on my feet lasting for up to 12 weeks. Even without taking antibiotics. I currently have it on my feet again this time for 13 weeks, along with loosing 35% of my left eyesight.
All I can say is I live a healthy lifestyle have no family history do not take drugs or drink. So as to why it keeps recurring... NO DOCTOR CAN TELL ME
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