I haven’t been around much lately and I have a pretty good excuse. On Thursday, September 21st, I woke up not feeling well. I thought I might be coming down with a sore throat or a sinus infection. I had a sore throat and a fever. Surprisingly the fever was 102 but I didn’t feel like I had that high of a fever. That should have been my first warning something was not right. When I woke up the next morning, my eyes were all red, my fever still 102, my throat and mouth really sore, and I had a rash all over my chest, arm, neck and face. It took until the following Monday for me to insist on going to the ER. By then my fever was 103, the rash was all over my body, my eyes were inflamed and I could hardly see, I couldn’t walk because of the burns on my feet, and my mouth was full of sores and bleeding.
When I got to the ER, the ICU doctor was ready to admit me but the ER doctor did not want me to stay in the hospital. He insisted I be ambulanced to the only Burn Unit in CT. My husband and I were shocked. I thought I had an infectious disease.
What I had were chemical burns all over my body. I was in mortal danger. I had SJS – Stevens Johnson Syndrome – precipitated from being on the gout medicine Allopurinal for only 14 days before first symptoms.
It’s been a long six weeks. I spent nine days in the burn unit and had the best of care. The awful burn symptoms finally stopped trying to kill me on the following Friday, September 29th. Up until that point, my life was in the hands of the doctors and nurses as my body was doing all it could to literally burn me to death from the inside out. Once my body started fighting, I started to get better. The burns started to scab over instead of fester and ooze. That was when I knew I was going to survive.
I had surgery on my eyes to try to restore and regrow my tear ducts and membranes. That was on October 1. They discharged me on the following day and I have been home healing ever since. I can see but have severe photosensitivity. My mouth is healing. The burns all over my body are fading. My recovery is slow but steady.
One of my new purposes in writing is going to be to make my readers aware of the dangers inherent in the drugs we put into our bodies. Please ask why you are being given a medicine and if there are other alternatives. Please research the drugs you are prescribed before you ingest them. Please search the Internet for stories. I know you cannot believe all you read on the Internet, but many, like me, are posting our stories to try to help people and prevent pain and suffering.
The really terrifying thing about SJS, besides the fact few doctors and fewer laypeople even know of the syndrome, is that it can be initiated by many different drugs.
My message to my readers is to be careful and thoughtful and intelligent about what drugs you are taking. Ask questions and do not always believe what you are told.
I should have taken tart cherry juice for the pain in my toe. Or at least tried it before taking the Allopurinal. I should have insisted on an X-ray. I should have prayed.
I am one of the lucky ones. I am one of the blessed. Many die from this syndrome, Many more go blind. I know that the prayers of those who knew what I was going through were heard and helped usher me from death to healing. I thank all of you who knew and cared and prayed and sent messages. Thank you from the bottom of my heart.
I am a SJS survivor and I want the world to know about this syndrome.
Here is a link to the Stevens Johnson Syndrome Foundation for more information.