35 years old
I was born in 1984 and have a PWS over the right eye, forehead and on my scalp. When I was about 6 months old I got my first seizure. I was diagnosed with Sturge Weber Syndrome Type 1 when I was about 1 year old.
It was very difficult to find a medication that would work for my epilepsy. If someone or something touched my left cheek, I got a real seizure so because of that I can't manage to sit on the left side of a car because of the seatbelt.
I know that my parents were thinking of operating on my brain to get rid of seizures but they finally decided not to do so. In 1992 I got a big seizure which made me have to sit in a wheelchair when the left side became too weak.
Then we found the medicine that I still take today which keeps me free of seizures. I have had 2 operations on my right eye for glaucoma I and take eye drops daily.
In the last 20-25 years I have had only one major seizure which was at the end of the summer of 2018. I have had some small seizures sometimes which where I will be “absent” for a few seconds and then I get migraines afterwards.
My left side is really weak and there is not much I can do with it. Also I have lousy motor skills and balance. Many people seem to think that when you have a PWS you either have been beaten or have taken a bad fall.
I can’t manage to work but have activities I enjoy and try to find more fun things to do.
I think it is important when you know someone who has Sturge Weber Syndrome, that you make sure that the person gets to test their borders themselves without parents or relatives taking for granted that they cannot cope with it.
In one photo I have a helmet on. I hated the helmet because my parents made sure I had boys hairstyle just because of the helmet.
I have always struggled with poor self-confidence.
Besides epilepsy and glaucoma, I also have sleep problem and as I mentioned earlier a left side that I hardly can handle anything with.
I have always been sensitive to stress which can sometimes lead to problems. School was a nightmare because I was bullied and the only person I liked, my parents did not want me to spend time with them.
I often had difficulties in many different subjects because it was simply too difficult because of the the issues SWS causes. Language and music were difficult while mathematics was quite simple. Writing for a test was a nightmare. If I was the least unsure I did not dare write the answer even though it might be right.
I believe that with a Sturge Weber diagnosis we may have to grow up a little too fast because you have to do so much with the healthcare and relatives tend to treat us differently, which just makes us more uncertain.
The most important thing to do when you have a child with this diagnosis is to let the child grow up like everyone else. The more you protect, the more it will hurt because they have to test their limits.