During my high school years, age 12 – 18, I attended an all boys boarding school in Sydney. The school was/is well known, among other things, for its sporting prowess. Senior teams are almost unbeatable. This could be put down to the camaraderie built by living in close proximity to your team mates for the whole of the sporting season; it could also be put down to the fact that every student was expected to play sport. In my time at the school, during the summer you could choose cricket, tennis or basketball and in winter you could choose any sport you wanted, as long as the only sport you wanted to play was rugby union! Obviously, with a diagnosis of EPP (unheard of previously in the school’s experience) my parents met with the school’s head teachers and arranged for me to be excused from outdoor activity.
I was the only child in the school with such an exception. During free-time, in the summer, most of my class-mates would spend hours at the pool, or playing on the sports ovals. I would spend most of my time by myself in the corridors or halls.
12 year old boys can be pretty brutal to their peers, especially those who are different. I became the butt of jokes, was bullied and picked on, called all sorts of names and experienced some pretty harsh situations. I remember one episode where I was in the change-room with a group of classmates, following a physical education class, where I had been sat aside while the rest of the class had to run up and down the fields. While we were changing, suddenly, the lights went out. When I woke up the teacher was standing over me and I didn’t know where I was. I had been king-hit and knocked out – later a comment was made by a classmate: “that would teach him”. I had no idea who hit me – no one owned up. To prevent further assault, I didn’t/wouldn’t speak to the teachers about it – I knew that would just make it worse! 23 years later at a school reunion, the classmate who assaulted me apologised. He had no explanation, but stated he felt truly sorry for what he had done. No child should have to endure that sort of experience.
EPP can’t be seen. While a person with EPP may be paler than other people, that can be put down to “fair complexion” or red hair or whatever. The “normal person” who gets sunburnt goes red. People with EPP don’t – we might blister but the sunburn takes only minutes and leaves the sufferer in pain for days.
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I’m a stockholder of Clinuvel. Even though my stock has lost some value, I’m hanging on to it because I want to support this product. I have a son who has a different handicap, but it only makes me more sensitive and aware of the problems young people like yourself have. It seems crazy to me that the regulators are making it so difficult to market this product. There’s a definite need in the world for this.