In 1981 I became the very first TS patient in Britain to be treated
by a laser beam for the facial rash.
I was 11 years old at the time and it was in Southampton General Hospital that I was treated with the Argon Laser by Mr Carruths, an ENT consultant, who
had been using the Argon Laser to remove port wine stains. How did it all come about? Well, my parents saw Mr Carruths on a
television news programme called Nationwide and decided to contact him to see if he felt he could possibly use the same treatment on the TSC facial rash.
At that time my facial rash was quite bad and although I was scared about the treatment I wanted to go ahead with it so I just though "OK, here goes".
When I went back after 6 weeks to see Mr Carruths he was very pleased with the result and said "I think we've made history here".
Since then I've been having treatment on the NHS but recently I've had to pay privately as my hospital trust won't fund it. I'm waiting to go to
the TS clinic in Bath and have now started to use sirolimus and, all in all, my skin is looking good.
I was born in 1970 and when I was just a baby I started having seizures. My parents didn't know what it was – we were in Germany at the time as my dad
was in the Air Force.
I was diagnosed as having TS when I was aged 5, by the German doctors. It was then that the facial rash started to appear.
By the time I was 11 the rash was very red and angry. And when I got to be a teenager then shaving was very hard. Now I use a special blade – a Gillette
Pro Glide which is fantastic for the facial rash.
After I was treated with the Argon laser for a while I was then treated with the Pulsed Dye laser which was even better. That was even better because
it left no scabs on my face. It's almost like I have been in the sun – and then the redness just disappears. I also had terrible little bits around my
nose, real lumps and little bumps. Now I have treatment with both the Pulsed Dye and the Smooth Lasers and that is so much better and really helps to take
away the fibromas.
I am one of those people who has been through a lot in terms of operations. At the age of nine I had a brain tumour removed, and I have a shunt in now
to deal with my hydrocephalus. I am just trying to be brave and get to where I want to be with my TSC. I have had to grit my teeth a lot – I don't
want to have to do these things, but at the same time, I do because I know that they are making me better. And not only am I helping myself but I am also
helping other people with these problems.
The good news is that as I have aged my health has improved and it is now six and a half years ago that I had my last seizure, which I think is marvellous!
This is because I went to the National Centre for Epilepsy at Chalfont St Giles where they gave me a new drug regime. I'm happy to stay on this medication
for the rest of my life.
We live in Oxfordshire and I have had jobs with Oxford University Press and at Oxford Brookes University. Now I run my own website from home www.charitylibrary.co.uk