My Story

Stevens Johnson Syndrome

When I was 3 years old I remember being carried into hospital by my dad. When I woke up I was in isolation, in a cot (I was rather indignant about that as I had a bed at home), I couldn’t stand up and people were looking at me through a glass window with masks over their faces. My dad came in every now and then. He smelt of cigars and read a paper. I shooed him out when I was bathed. I remember this particularly well, I was fed ice cream and cream was applied to my blisters. I was in hospital for 15 days. I left with one deaf ear, MacLeod Syndrome (one lung stays tiny) and scars, in all areas.

This was Stevens Johnson Syndrome. I had a severe allergic reaction to something. No one knows exactly what, it could have been a chemical that was being used by my brothers to paint their metal figures, it could have been a virus, it could have been a plant outside. The effects were so severe that my hair fell out, my body blistered inside and outside and my eyes blistered too.

I also completely recovered. Or so I thought.

A few good times and some bumps and scrapes later I found myself back in a consultants chair at the age of 28, pregnant and half way through a degree. His name: Professor Harminder Dua, ‘Prof’ for short, and he asked me if I had Stevens Johnson Syndrome. He knew instantly. He suggested a brush away of the affected epithelial cells as they were encroaching on my cornea and making my eyes sore and red. It was a traumatic week spent going backwards and forwards to the eye department at Queens Medical Centre, Nottingham. It was painful. The cells in the eye have to be the most sensitive in the body as they react to light, it also makes them the fastest to heal which means that there is always a race between the defective cells and the new cells. Thankfully anesthetic eye drops are great, but once the drops wear off it is very painful. But that too subsided and after a few days of scraping and healing the good cells won and all was well.

Roll on 17 years and I started to feel the same old prickles in my eyes. I found myself back at QMC sitting in front of ‘Prof’ and he was as reassuring and as concerned as ever. This time over a period of 3 years the scrapes did not work. (I tried to have them in the holidays so I could work around my classroom duties…). Things started to get serious one day when someone started talking about cancer and stem cells. I really didn’t like that and grumbled at Prof. He was as gentle as ever but explained that my eyes were not getting any better and the epithelial cells were encroaching over the corneas on both eyes. There were some options but it wasn’t going to be straight forward.

Since 2018 my eyesight has deteriorated to such a degree that I have retired from classroom teaching. I got some support from RNIB (www.rnib.org.uk), Art Therapy (www.newbeginningsart.co.uk) and sightsupportderbyshire.org.uk. My consultant, Prof Harmindar Dua is a terrific support and my brother and daughter have given me some of their cells as a transplant. My husband is absolutely wonderful and together we are navigating our future.

I do have photophobia, (like coming out of the cinema, only all of the time..) and my vision is limited to looking down, due to all of the scar tissue in the upper half of my eyes. If you smear vaseline over a pair of glasses and just wipe a tiny bit clear from the left lens that is roughly what my vision is, which though isn’t ideal for driving (I did love driving) or reading normal print, it is absolutely better than nothing! I have wonderful consultants doing a great job and discovering new inventions, and some people have it so much worse than I do.

I have started back on the ladder again, tutoring children to read, painting (thank goodness I can look down) and offering workshops to support Health and Wellbeing. I to think I take things at a more gentle pace…

Please do contact me if you would like to know anything further.