Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Hello everyone, My name is Tera, and I just found your group today, after being curious about what information would be on the internet concerning my syndrome. I am very surprised to find so many people in the world with my condition! I thought I was one of five or ten! It is bittersweet to read through the messages here, and to look through all the photos. I am 35 years old, and I had my first surgery at 5 months. I then had further surgery at 3, 4, and 12 years. My last minor surgery was at age 18. I really can't complain, because I haven't had any complications since my last major operation at age 12. Everything has stayed in place for 23 years! When I was born, no one had any idea what was wrong with me. They thought, perhaps, that I had a mental impairment because I didn't open my eyes. Finally, my poor mother listened to the good advice of a neighbor, and took me to a specialist at Children's Hospital in Pittsburgh, which is affiliated with a university hospital. He knew exactly what my condition was. I had an excellent plastic surgeon, who specialized in eye disorders. I think that it is so important to search for the most specialized surgeon available. I would say that my condition most affected me as a teenager, with concerns of whether or not boys would think I was pretty. I suppose one boy did, because I am married now. We have a five year old daughter, who does not have my syndrome. Right now, we are beginning a new year of homeschooling, which is very exciting. I am looking forward to chatting with you all! Tera Quote Link to comment Share on other sites More sharing options...
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