Oh...My...God!!! I Can't Believe There Are Others JUST LIKE ME!

[Guest guest]

Yesterday, I accidentally came across a website that led me to this group and the discovery that after 50 years I am not only NOT ALONE, but I have a name for the eye disfigurement I was born with, and a reason for my POF (I'm a woman, obviously)! I have never, ever known or even seen another person who looked anything like me in my entire life (other than the banjo playing hillbilly boy in the old movie, "Deliverance" and even that was iffy)! I was in tears and felt like I had found long, lost family members! Isn't that weird!? I called my now elderly mother right away and told her all about it. She was shocked, of course, but so pleased for me. She, too, had no idea that there was an actual name for this condition or that it was even related to genetics as we don't have any history of it in our family. My parents and I were always told that I was born with "undeveloped eyelids" or some form of Ptosis. Back in 1956 I guess it was a pretty unusual birth defect -- at least it was for my doctors! I endured 10 surgeries over 10 years and lost the sight in one eye due to complications. From looking at some of the pictures in your photo albums I guess BPES can take various severities, and it also looks like the medical field has truly improved it's treatment of it. I, myself, have much scarring and there is an obvious differentiation between each eye. I'm also severely nearsighted in my sighted eye. But I'm very grateful with what I have. I have so many questions that I hope I don't become a nuisance in this group! Anyway, I'm just so thankful that you're here and I look forward to my time spent with you. God Bless -- Dannah