Re: 14 month old from Germany

[Guest guest]

Hi, My name is Sabine, we live near Vienna.

Our son, Elias, is diagnosted with BPES.

He is 2 jears old and we love him. RThere was no surgery done till now.

We are also looking for a good doctor in Germany or Austria.

Maybe Prof. Boergen in München may help you.

We hope to hear from zou again!

SabineAnja Shahin <anjashahin@...> wrote:

Hi, I live in Germany, our 14 month old a has BPES, she was born in the USA (Seattle). She has been diagnosed when she was 2 month old. We have just moved to Berlin-Germany. Apearantly there is no need for surgery right now because her vision is not affected. She has no motoric problems, startet crawling at the age of 6 month, walking at 13 month. We were advised in Seattle to wait with the surgery until the age of 4-5y, however we are looking for a plastic surgeon in Europe who has experience with the epicantus and ptosis procedure. Has anyone of you heard of specialists in Europe? I´d be greatful for some advise.We are getting a genetic testing next week as my husband and I do not have BPES but my husbands sister has had ptosis (without epicantus etc..) so the doctors wonder if she might have inherited her

condition from her father although he does not have it himself ...Hope to hearing from you soon, Anja

[Guest guest]

Hi Sabine,

thanks for your response. Meanwhile I´ve done some research. I have heard

from the University Klinikum in Munich, but the name of the Plastic Surgeon

is Prof. Dr. Hintschich. He is specialised in eye-lid plastic surgeries and

has some experience with BPES, too. We are going to see him later this year.

I´ve also heard of the Universitiy Hospitals in Aachen, Regensburg and

Trier. However, the European Pediatric Ophthalmological Society (EPOS) is

located in Regensburg-Germany (hosted by Professor Dr. Birgit Lorenz), they

are very cooperative and helpful, here is the link:

http://www.epos-focus.org/

Looking forward to hearing from you again, good luck to you and your son!

Anja

>From: Sabine Nowak <binenow@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis 14 month old from Germany

>Date: Wed, 20 Aug 2003 11:49:31 +0200 (CEST)

>

>Hi, My name is Sabine, we live near Vienna.

>Our son, Elias, is diagnosted with BPES.

>He is 2 jears old and we love him. RThere was no surgery done till now.

>We are also looking for a good doctor in Germany or Austria.

>Maybe Prof. Boergen in München may help you.

>

>We hope to hear from zou again!

>Sabine

>

>Anja Shahin <anjashahin@...> wrote:

>Hi,

>

>I live in Germany, our 14 month old a has BPES, she was born in

>the USA (Seattle). She has been diagnosed when she was 2 month old.

>We have just moved to Berlin-Germany. Apearantly there is no need for

>surgery right now because her vision is not affected. She has no

>motoric problems, startet crawling at the age of 6 month, walking at

>13 month.

>We were advised in Seattle to wait with the surgery until the age of

>4-5y, however we are looking for a plastic surgeon in Europe who has

>experience with the epicantus and ptosis procedure. Has anyone of you

>heard of specialists in Europe? I´d be greatful for some advise.

>We are getting a genetic testing next week as my husband and I do not

>have BPES but my husbands sister has had ptosis (without epicantus

>etc..) so the doctors wonder if she might have inherited her

>condition from her father although he does not have it himself ...

>Hope to hearing from you soon,

>

>Anja

>

>

>

>

[Guest guest]

Re: blepharophimosis 14 month old from Germany

HI there, I am from NZ so have no idea about specialist in europe? Our son ethan was diognose at 1 month old, and we have been told that he won't have any surgery until age 5-7! seeems way to long to wait:(...we'll see how it all comes together, dr sees ethan every 6 months, to make sure his eyes are not been affected by the bleph!...other than that, he is the most happy healthy baby you could inagine! he is 7 months old in a few days, he is saying bubba, getting on all fours and scooting to get where he wants:) so cute...

Do u have a photo that you could scan to us, of your child, I have some if you would like to see ethan:) let us know....talk later, byebye...leanne form NZ

Hi, My name is Sabine, we live near Vienna.

Our son, Elias, is diagnosted with BPES.

He is 2 jears old and we love him. RThere was no surgery done till now.

We are also looking for a good doctor in Germany or Austria.

Maybe Prof. Boergen in München may help you.

We hope to hear from zou again!

SabineAnja Shahin <anjashahin@...> wrote:

Hi, I live in Germany, our 14 month old a has BPES, she was born in the USA (Seattle). She has been diagnosed when she was 2 month old. We have just moved to Berlin-Germany. Apearantly there is no need for surgery right now because her vision is not affected. She has no motoric problems, startet crawling at the age of 6 month, walking at 13 month. We were advised in Seattle to wait with the surgery until the age of 4-5y, however we are looking for a plastic surgeon in Europe who has experience with the epicantus and ptosis procedure. Has anyone of you heard of specialists in Europe? I´d be greatful for some advise.We are getting a genetic testing next week as my husband and I do not have BPES but my husbands sister has had ptosis (without epicantus etc..) so the doctors wonder if she might have inherited her condition from her father although he does not have it himself ...Hope to hearing from you soon, Anja