Looking for an optometrist/surgeon in my area...

September 14, 2006

Hi everyone,

I've been a part of this group only for a week or so and I've just

been observing, but now I'm really hoping that someone somewhere could

help me out. I've been dealing with having BPES my whole life, but

after waking up one morning with yet another eye infection that made

my face swell and left me bedridden for a day, I finally lost it. That

was when I joined this group; I decided to post for help because I

have another swollen eye today. I'm 22 and I have BPES and I live in a

very rural area of New York state, and I can't seem to find any doctor

who can actually treat me. I don't know where to even begin when it

comes to finding a doctor, and I thought maybe someone in this group

could help. I already had three surgeries when I was a baby, and then

one more when I was 12. I don't really know what all of them were for.

I had one that removed a muscle from my leg and put it into my eyelids

(it failed) and then other ones to fix my tear ducts. I've been left

with eyes that I cover in makeup, and eyes that I have not been able

to close in over twenty years. Because I can't close my eyes, I get

regular eye infections that leave me completely disabled for a day. I

don't know what to do! I've had the help of my mother throughout all

of this, and she is very willing to come with me (no matter how far)

to any doctor I can find to help me get treatment (be it surgeries or

even a doctor that just understands the condition). I don't know how

to find a doctor, though. I need someone who can treat a post-surgery

adult and who can hopefully recommend me to a surgeon to try and fix

whatever needs to be fixed so that I can function every day. I live in

the corner of New York right up by Canada and Vermont, so I'm pretty

far from everything. I had a decent doctor in Albany, but he wasn't

hopeful about my condition at all; I want to be able to go to a doctor

who thinks that there is something that can help me. I'm so frustrated

that I have to live with the ridicule and questions and stares, but to

be in pain almost every day is even worse. If anyone can just point me

in the right direction, it would be wonderful. I just don't know where

to go from here.

Thank you all,

Sydney

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