To: Governor Kevin Stitt
Stevens Johnson Syndrome Awareness month
To declare August as Stevens Johnson Syndrome awareness month.
Why is this important?
I was taking Bactrim DS in March of 2003 for a urinary tract infection. I was told when taking an antibiotic you have to complete its course. After taking the med for 3 or 4 days I had begun to think I was feeling better. But little did I know I was getting worse day by day. On day four or five I went to work. I was working as a dietary aide at Epworth Villa. I was fatigued and very lethargic. The nurses there checked my temperature and it was 104 degrees. I was taken immediately to my primary care physician. I was told to go directly to Edmond Medical Center E.R. for evaluation and treatment.
As I was admitted to the hospital and asked thousands of questions; my skin began blistering literally within minutes of being there. I began to have blisters on my face, neck, back, arms and chest. Once the blisters appeared, my skin began to darken. I looked exactly like burn patients who have been in a house fire. I stayed in Edmond Medical Center for a day or two. Many tests were run. Different specialists were contacted to see if anyone had an explanation on what was happening. It seemed like an eternity that I was laid up burning from the inside out. Doctors soon learned that I had a rare disease known as The Stevens Johnson Syndrome. It is a major allergic reaction to sulfa. It literally burned me from the inside out.
At some point I was transferred to Baptist Burn Unit. I was treated exactly like a burn patient. The blisters that had formed all over my body could not be seen now, due to my skin turning black. I was “classified” with third degree burns over 50% of my body. Slowly my skin started to slough or just fall off. I remember my bath days which were agonizing, dreadful and most of all painful. It felt like I was getting bathed with a cheese shredder. Each wipe with the sponge hurt more than the first. I can remember yelling and screaming for dear life during baths like it was yesterday. My skin was burned; gone. After each bath I was wrapped like a mummy in silvadene and rolls of kerlix in order to keep infection down.
At this time my eyes were sealed closed. There was a decrease in my mucous membrane production. I couldn’t see for over three weeks. My eyes were sealed closed. Could you imagine being 19 and blind? Many people take their eyesight for granted. What I’ve learned is that a person’s perceptions of how things are in life are totally different when you can’t see. As a result of the decrease in tear production, I had dry eyes and a damaged cornea. I have used eye drops at least twenty times a day, otherwise my eyes will feel like sandpaper. I feel some discomfort in my eyes at all times. I also blink like twenty times more than the average person. I can’t go to the movies or focus on things for a long time either. I often experience blurry vision and pain in my left eye.
Due to the blisters and burns in my mouth I couldn’t eat or swallow. I had to have a peg tube placed in order to obtain adequate nutrition. At the age of 19 having a peg tube was “not cool.” For three months the peg tube was my main source for food and water. I had it removed on my twentieth birthday.
The Stevens Johnson Syndrome is not a rare disease. Many people do die from this. Doctors informed my mother to prepare for the worse, which is a patient’s worst nightmare. Through the grace of God I’m here to tell my story. My purpose of writing this letter to Governor Mary Fallin is to send awareness about SJS/TEN. I would like to declare August as SJS awareness month. Please take the time to consider.
SJS Survivor
As I was admitted to the hospital and asked thousands of questions; my skin began blistering literally within minutes of being there. I began to have blisters on my face, neck, back, arms and chest. Once the blisters appeared, my skin began to darken. I looked exactly like burn patients who have been in a house fire. I stayed in Edmond Medical Center for a day or two. Many tests were run. Different specialists were contacted to see if anyone had an explanation on what was happening. It seemed like an eternity that I was laid up burning from the inside out. Doctors soon learned that I had a rare disease known as The Stevens Johnson Syndrome. It is a major allergic reaction to sulfa. It literally burned me from the inside out.
At some point I was transferred to Baptist Burn Unit. I was treated exactly like a burn patient. The blisters that had formed all over my body could not be seen now, due to my skin turning black. I was “classified” with third degree burns over 50% of my body. Slowly my skin started to slough or just fall off. I remember my bath days which were agonizing, dreadful and most of all painful. It felt like I was getting bathed with a cheese shredder. Each wipe with the sponge hurt more than the first. I can remember yelling and screaming for dear life during baths like it was yesterday. My skin was burned; gone. After each bath I was wrapped like a mummy in silvadene and rolls of kerlix in order to keep infection down.
At this time my eyes were sealed closed. There was a decrease in my mucous membrane production. I couldn’t see for over three weeks. My eyes were sealed closed. Could you imagine being 19 and blind? Many people take their eyesight for granted. What I’ve learned is that a person’s perceptions of how things are in life are totally different when you can’t see. As a result of the decrease in tear production, I had dry eyes and a damaged cornea. I have used eye drops at least twenty times a day, otherwise my eyes will feel like sandpaper. I feel some discomfort in my eyes at all times. I also blink like twenty times more than the average person. I can’t go to the movies or focus on things for a long time either. I often experience blurry vision and pain in my left eye.
Due to the blisters and burns in my mouth I couldn’t eat or swallow. I had to have a peg tube placed in order to obtain adequate nutrition. At the age of 19 having a peg tube was “not cool.” For three months the peg tube was my main source for food and water. I had it removed on my twentieth birthday.
The Stevens Johnson Syndrome is not a rare disease. Many people do die from this. Doctors informed my mother to prepare for the worse, which is a patient’s worst nightmare. Through the grace of God I’m here to tell my story. My purpose of writing this letter to Governor Mary Fallin is to send awareness about SJS/TEN. I would like to declare August as SJS awareness month. Please take the time to consider.
SJS Survivor