A Brief Summary of my life with Stevens-Johnson Syndrome

My first experience of Stevens-Johnson Syndrome (SJS) began in July 1998 when I was 12. I was in my last few weeks of the High School year when I began to feel very sick. I went to see the doctors on a regular basis, but I was constantly being told at the time that I only had a virus, and it would get better shortly. It “looks worse than it actually is”.

After a week of going to and from the doctors my parents became extremely concerned because I couldn’t eat, drink, sleep and was constantly being sick. Even the fellow patients at the doctors wanted to let me go before them because I was so ill, bleeding from the mouth and panting for breath. In the end, the doctor made me wait.

Although the detail is very sketchy, I remember my parents becoming very concerned that my health was deteriorating at such a rapid rate that they insisted a doctor came out to our house to check on me.

It turned out to be a good job they did, as within five minutes of the doctor seeing me I was being admitted to hospital with double pneumonia. I remained in the hospital for almost a week as, along with the pneumonia, I had Stevens-Johnson syndrome.

I had this in my mouth, down my throat and almost reached my stomach. Nurses had to look after me 24 hours a day, and had to bathe my mouth with sodium bicarbonate and cover my lips in Vaseline, just to make sure my lips didn’t stick together. It happened a few times, and it was absolutely horrendous and always resulted in my lips bleeding a lot.

As a result of what had happened to me, I found that I had great difficulty in breathing to start with. Nurses used to visit the house to check how I was doing with regards to breathing and my general health. One of the first things I noticed was that not many doctors and nurses even knew what Stevens-Johnson Syndrome was, and also the amount of attention I got from Student Nurses who were interested to see how bad the SJS had got.

After quite some time things gradually returned back to normal and I was back to full health.

However, I had a second round of SJS back in 2009. I remember having a bad round of flu, after what had been a very good year health-wise. Everything was absolutely fine until one night I remember asking for something like Lemsip, just to clear some of the catarrh in my throat.

That very same night though, I was violently sick. I remember my throat feeling like it had been ripped to shreds, almost like left over Lemsip powder had scorched my throat.

I didn’t think anything of it at the time, but within a day or so I was beginning to feel a “tingling” sensation on the inside of my upper lip. I became very alert to this, as it was very similar to that of 1998. I immediately started taking medication that appeared to help from previous experiences. However, on this occasion it appeared to be too late. Within a week I was not able to eat, drink or sleep again. I couldn’t concentrate on anything and felt extremely hot.

However, on this particular occasion I found that my sight was gradually disappearing. My parents took me straight to the local “out of hours” surgery and the doctor prescribed antibiotics (erythromycin) and said to get my eyes checked at the eye hospital when I felt better – at which point my eyes were ulcerated and bleeding.

On visiting the eye hospital, I was immediately referred to their main hospital, as they recognised straight away that I had SJS. At this point in time I had partially lost my sight, I had markings all over me, had ulceration in my mouth, down my throat, in my stomach, up my nose and round my eyes, and just couldn’t eat, drink or sleep at all.

It is also worth noting that at some point during my hospital stay I contracted MRSA, which also needed treating alongside the SJS.

This particular round of SJS was bad, as I had an epileptic convulsion in 2000, which resulted in me taking anti-epileptic medication “Tegretol” (carbamazepine). Doctors were quick to alert me to the fact that “Tegretol” was known to cause SJS, and as a result immediately took me off this medication.

They changed my medication, and even to this day, I have not reached an adequate form of medication to replace “Tegretol”. I have epileptic convulsions every four to six weeks on average, and there is no sign of controlling my epilepsy 100%.

After all of this, I have noticed many changes in me myself. I often find I am very weak when it comes to lifting things around. I also find that trying to think things through properly takes additional time. However, the biggest difference I have found is my intolerance to heat. Compared to other people in the office I work in, I struggle to cope with the excessive heat.

I also find that I am restricted in what medication I can take now. For example, I find that if I take any medication with penicillin in it, it can lead to the possibility of me having SJS again.

There is one big thing that stands out the most from this though. It astonishes me that so many doctors I have seen, do not know what SJS actually is. This condition has also hindered my career since the events of 2009.