South Africa - Williams Welcome
Hi there all you PXEers, my name is Judy Williams. I am fortunate enough to live in beautiful Durban Kwa Zulu Natal South Africa. Our province is a tropical one. We have the ocean right on our doorstep and the mountain just 1 ½ hours away. In fact it is the best of both worlds I think. We don´t have any snow unless we are very lucky when we go to the mountains; in fact we even swim in mid winter!
My story? I am an almost 56-year old woman, married for 37 years to the most amazing man. He is so thoughtful and helpful through thick and thin with PXE (you all know what I'm talking about I'm sure?). I have a 34-year old son, married with a 2-year old son and I have a 30-year old daughter married to an American living in Michigan. She has a 3-year old son and a 1-year old daughter. I truly am blessed with my family and am very thankful for them every day.
My family noticed my 'dirty neck' when I was 11 years old. My mom scrubbed and scrubbed. That didn´t work so she took me to a dermatologist who did a biopsy. Because this was 45 years ago in “deepest darkest Africa”, no one discussed this with me. Needless to say I was pretty terrified. In fact hearing all the discussions made in whispers behind my back I truly thought I either had been very, very bad or I had an awful disease which would most probably kill me, hence the secrecy. I, finally, terrified of the unknown, spoke to my grandmother. She was very angry with my parents, any grandmother would be, and told them to get the doctor to tell me what was wrong. Finally I heard the truth; by then I was 12 years old. Do you know what a relief it was to hear I “only” had some freak, unknown genetic problem no one could help with, I should simply learn to live with it, poor girl? This is why I always insist on the truth to your children - better the truth than the unknown, I promise you.
Finally when I was 26 years old I saw a specialist. He asked me if I knew what I had. When I told him not really, he contacted a genetics department at the hospital. I was seen, biopsied once more, eye test etc and finally diagnosed with the truth, PXE, warts and all. Actually it was a relief to finally know it all.
So, here I sit, my vision isn't great any longer BUT I have my computer and other visual aids I'm very thankful for. Yes I do have pain in my legs with claudication but I am very aware of this and exercise so the pain isn't too bad.
My reason for having this PXE support in Durban is because all these horror stories don't happen any more. We all have the Terry's and PXE International to thank for that and if I can share all I have learned and am learning, it's the very least I can do.