West Australia - Zuiderduyn Welcome
Dear everyone in PXE land,
Just a short introduction to the West Australian branch. My name is Fred Zuiderduyn, and I live in the outer reaches of Perth's suburbs, nestled in the surrounding hills. I was first diagnosed with PXE in 1951 at age 11, had the peau d'orange in the retina, and of course the 'dirty neck' syndrome. Mum couldn't wash it off, and what was worse, my brother and younger sister 'caught' the same dirty neck. Off to the doctor's and diagnosed as having PXE. Later, during 1956, saw an eye specialist, who didn't recognize the peau d'orange, and was quite convinced that I had cancer in the eyes, and my eyes should be removed. Of course I was welcome to get a second opinion... I'm still here, have two eyes, still have peau d'orange plus angioid streaks and can still see.
In Perth we have about a dozen people diagnosed with PXE, a few more scattered around the country side. Most are middle aged by now and have 'accepted' PXE as being a fact of life. We meet occasionally, but are not too active, part of the problem being time as most of us are still working.
It's exciting to learn about all the other contact points and support groups around the world. We now KNOW we're not the only people in the world with PXE. Thank you Sharon and Patrick and family for the tremendous job you're doing for us all.