RE: i have BPES, 15 yr old girl/astigmus/european surgeons

[Guest guest]

Hi Chirsti, my name is Bernice and i just want to thank you for your

wonderful mail. It is a great encouragement to hear you love your eyes!

My daughter Nina just turned two last week. She has the silicon sling

done at the age of 5 months. She's beautiful and doing great. She's got

glasses for astigmatismus (don't know the correct English word). The

dr's say this could be because of the pressure of the eyelid. I hope so,

that would mean a operation will deal with this as well. Do you or

anyone else has experience with this?

I also want to react on the Anja's mail. I just read your mail about

a. I'm sure there must be capable oc.plas. surgeons in Germany. But

in case you can't find them I just want to let you know of some surgeons

in The Netherlands, of whom is said they are very capable of doing the

surgeries. We see the italian dr Baldeshi in the AMC Hospital

(Amsterdams Medisch Centrum). He did Nina's ptosis operation and will do

the other operation(s) as well. We also went to visit a 'famous'

eyehospital in Rotterdam were saw dr Bosch, he showed me some pictures

of work they did which looked beautiful. We got the names via friends

who work in academic hospitals and informed with their colleagues. I

believe this is a good way to find the right specialists.

I am amazed that as this egroup keeps on growing, there are so few from

Europe compared to the US and Canada. I hope this will change in a few

years time. I expect there will be more information to share in the

future.

Good luck in your quest for a good doctor!

Bernice

-----Oorspronkelijk bericht-----

Van: christi_lee06 [mailto:christi_lee06@...]

Verzonden: zaterdag 9 augustus 2003 8:06

Aan: blepharophimosis

Onderwerp: blepharophimosis i have BPES, 15 yr old girl

hi, my name is christi. i have BPES, it was passed on to me from my

dad who got it from his dad. My little sister also has it.i have had

5 surgeries on my eyes. i had my first when i was 3. the doctor i had

at that time didnt know what he was talking about and told my mom i

wouldn't need anymore surgeries after that, he was wrong. ha I saw a

new doctor, a plastic surgeon. His name is dr. Harvey Cole and he is

amazing. He is one of the best in the country and he has been called

the best in the South. For one of the operations he took tissue from

my thigh for the muscle in my eye. (not exactly sure what that did) I

also had a surgery where he put wires through my nose to bring the

corners of my eyes closer together. Dr. Cole also made artificial

creases on my eyes because i didnt really have them before. On August

19, i will be having another surgery to touch everything up. He had

said before that i would need another one after my face had developed

more. That doesnt mean that its better to wait until you're older

because if you wait too long it can affect your vision. Before I had

my surgeries, people would ask questions, some would tease, some

mothers would even say rude things to my mom. Since my surgeries, i

get some questions, but mostly people want to know where im from.

They think my eyes are exotic looking and i love that. My eyes are

actually one of my favorite things about myself. It can be difficult

looking differnt and I cant always do my eye make-up the way i want

to, like they have i magazines or on t.v, but i deal and make do with

what i have. i hope these can be used as words of encouragement. i

would love to hear back from anyone.

Christi