Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 Hi All, I am very unfamiliar with BPES and have only started research on it. My daughter who is 13 was clinically diagnosed with it back in June of 06. We had blood work done and it was sent to Belgium. This confirmed her diagnosis. We are going to a genetics doctor but he doesn't seem to know very much about BPES. I was wondering now that we have a diagnosis what steps should we take in order to find out what Type she has. If any one also knows a doctor in the USA that is familiar with this please let me know. For years we have been working with doctors who have had no clue. The genetics doctor did say that we should see an endocrinologist. On another note: I read the message about the lady just finding out what type of BPES she has and whether or not she wants to have children naturally or from an egg donor. I can tell you my daughter suffers every day because she looks different. Kids pick on her because she has different eyes. I am guessing them picking on her has just started since she is in middle school. I know that this is a tough age group anyway and kids will say anything to make themselves look better. She has social anxiety which makes it even harder for her to make friends. She is a great kid with a heart of gold. So I guess I can understand only from a mothers point of veiw what the other lady was saying in regards to her childhood. Have a good day all. on from New Hampshire USA Quote Link to comment Share on other sites More sharing options...
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