database now has 46 entries

[Guest guest]

Hi everyone, this is mainly for all the new people who have joined

the group in the past few months.

We have a very simple database, and the easiest way to see what is in

it is to click on " Database " and then click on " BPES List " .

Please don't feel like you have to enter all the information in the

columns. Put in as little or as much as you like.

The point of the database is to get an understanding of who in or

near your area has BPES. You might be interested in meeting somebody

in person. Also, there is a column listing very brief surgery

information, which may of use to some people.

This information also helps to try and work out how many people have

BPES. I have done some estimates and discussed it with a couple of

people, and I think it is around 1 in 150,000 to 1 in 200,000.

If you have any questions or suggestions, please do write to me.

Thanks, Shireen

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Instructions for entering info on the database:

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1. click here: blepharophimosis/

2. then click on " Sign In " - it is in the top left corner of the

screen. If you are a new user, you will have to click on " Sign Up " .

3. After you have signed in, you will see " My Groups " on the left of

the screen, and " blepharophimosis " under it. Click on blepharophimosis

4. Now click on " Database " , this is in the left of the screen, just a

little below " Photos "

5. Click on " BPES List "

6. Now click on " Add Record "

FOR THOSE WHO ALREADY KNOW HOW TO SEE THE PHOTOS - start from step 4

Please note that you do not have to put all the info in. For example,

if you prefer to just enter the country you live in, then that is OK.

I only wanted to put in my first name, so that is what I have done.

If you are a parent of a child with BPES, then add one entry for your

child, as if they were entering the information for themselves.

Shireen