Re: Chronic Progressive External Ophthalmoplegia (CPEO)
I, too, have CPEO or The Chronic, as I call it. It showed up in my left eyelid when I was 16. At 20 I had an eyelid lift. At 28 I was getting double vision and had a strabismus surgery at UCLA to correct that, where I was finally diagnosed with CPEO. At 29 I had the frontalis sling done at UCLA to help lessen the droopiness of my left eyelid. I am currently 33.
My dad has this disease, full blown. Both eyes, both eyelids, muscle weakness, and he couldn't swallow much of anything for most of my life. He got that ability back about ten or so years ago. He is currently 62 and his eyelids started drooping in his late teens, early 20s.
So far, I don't have any other symptoms. Neither my older sister or my younger brother have any issues whatsoever.
Some days my eye looks almost normal...to me. Other days it looks pretty bad. I have had plenty of people walk right up to me and ask me if I have been punched in the face or what is wrong with my eye. People can be so rude. I do my best with eyeliner to camouflage it but I find myself struggling with the fact that I will never look "normal". To top it all off, I'm an actor.
The surgeon at UCLA who did my frontalis sling said I would never look normal but that this would get me as close as I could be. I'm under the impression that since this is a progressive disease that I'll periodically have to go back in and have it adjusted. I'm just not sure when I should do that.
I haven't seen anyone for my eye since my last surgery which was 4 years ago now. I'm frustrated that there's nothing I can do to make my eye look better. I'll be walking along thinking I look normal and someone will make a passing comment about my eye and it brings me right back to the reality that I DON'T look normal. I try not to let it bother me but it's right there on my face. And I'm an ACTOR. That's what people look at - my face.
I've never known anyone besides my dad who had this so even though it sucks, it's nice to know I'm not alone. =)