RE: Are there young people?

[Guest guest]

Hi

Welcome to this group. There are young people in the group with this condition. My daughter is just twelve. She has not been directly involved in the group. But you can post messages which I can pass on. She has a photo on the web site under Mayowa and Tina.

All the best.

Joyce

[Guest guest]

Dear

Welcome to the group.

Here is a suggestion, you may like to go to the section of the group called "database"

Click on "BPES List". You can arrange to see the list sorted by the country that people live in. Alternatively you can see the list sorted by the age of the person.

The people in this list are those people who have chosen to put information about themselves on the site.

This site has nearly 500 members - of which about a quarter are on the "database".

I have tried to estimate the number of people with BPES, and I think that one in 150,000 people have BPES.

If I am nearly right, there are about 500 people in Germany with BPES.

It would be great if the group expanded. I guess that it is easier for people to communicate in their own language.

I hope that you are able to get in touch with somebody. In the UK a lot of people are still away on summer vacation, back soon though.

Take care

Shireen

(I am 45 years old, and the only person in my family with BPES)

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of sugar_anna89Sent: 02 September 2006 19:24blepharophimosis Subject: blepharophimosis Are there young people?

HiMy name is and I live in Germany in Berlin. Sorry if my english is bad but I have only English in school and the teachers often tought things which nobody need to write an English person.Well,I have BPES too and I want to talk with another young girl in my age. I am sixteen but the girl can be older or a little bit younger. I search a friend to write e-mails or letters and I have MSN Messenger(Sugarannamsn-attention this adress isn´t my e-mailadress!).I want to know how feel the young people with this problem or have they no problems? I can´t find people in my age in Germany with BPES and so I hope my search to finish here.Nice greetings