Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Hello Everybody, I'm new here. Let me introduce myself and my short story. I'm Kasia, I'm 28 and I'm from Poland, but living in Ireland. Since I can remember, I knew my eyes were different from all other children at school and so on... I've noticed it quite early, as polish people weren't very tolerant of any otherness' (it changed a little bit nowadays), they gave me quite a hard time... My parents told me, that I had two surgeries when I was small (3 & 4), because my eyes were so small... However they never mentioned to me, how this disorder is called. I even think, they don't really know, as this is a really rare disorder. When I was a teen, I started to look for more information about it, but on this stage of my life my English was too poor to search on te internet and in Poland there was no information about this disorder and I only found some information about Ptosis and assumed that's it, even if I told this doesn't exactly match my symptoms. And I left it for quite a while... But because I'm getting married soon and we're thinking about having children I started to search again for information about it and what I finally found - just devastated me - I have the full symptoms of BPES, I'm not sure as yet of which type, but judging from my rare periods - probably type 1. This is absolutely shocking for me - to discover all this things just by accident... There was not enough information about this disease in Poland, so I don't blame doctors, they just didn't know and didn't look for answers... I have a brother and a sister. She has the same problems... And we've got it from our daddy... However nobody knows where he has it from... I would like to ask you for advice, where to start? To what kind of doctor should I go first, to confirm the diagnosis and to check which type of BPES I have. I would like to know, how many of you (I'm referring here to girls as I already found out this doesn't affect men) have BPES and became parents? And was it difficult to get there? Are your children affected? It's a great feeling - after all those years – to finally find out, that there are more people like me... Yours Kasia Quote Link to comment Share on other sites More sharing options...
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