RE: china beijing with Blepharophimosis(two major features,not four major features)

[Guest guest]

Hi!!!

I am in Beijing also! I have BPES, and so does my daughter. Please drop me

a note on my email (micah_truman@...) and lets meet up.

Micah

blepharophimosis china beijing with Blepharophimosis(two major

features,not four major features)

Hi there, My 45 days daughter has Blepharophimosis. she was born on

Oct. 9th in 2007 in beijing of China. she has two major features

(note:not four major feather):blepharophimosis, ptosis. we were

wondering if there is anyone else with this syndrome?

[Guest guest]

>

> Hi there, My 45 days daughter has Blepharophimosis. she was born on

> Oct. 9th in 2007 in beijing of China. she has two major features

> (note:not four major feather):blepharophimosis, ptosis. we were

> wondering if there is anyone else with this syndrome?

>

Hi,

My son has BPES; he has only 3 of the recognised 4 major features;

ptosis, epicanthal folds and telecanthus (widely spaced eyes). His eyes

are of 'normal' range width. I have been looking for information on

people with BPES with less than all four 'symptoms'.

Welcome to the forum; everyone here has been really helpful and nice to

me so far (I am new too!). Best Wishes

Cretemum

[Guest guest]

Hi

About recognised features - it may help you to take a look here:

http://www.geneclinics.org/servlet/access?

db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti

& filename=/profiles/bpes/index.html

and then take a look at the sections called: Clinical Diagnosis

then take a look at:

Differential Diagnosis.

Just to say that I am suggesting that you look here to get background

information to help you ask your doctor some more questions. I am not

suggesting that you try to do some self diagnosis as that would be

inappropriate. This resource has turned out to be enormously helpful

to lots of people who are members of this group, as well as medical

professional. Each time I see a doctor or optometrist I will take

along a copy of this article and say " this applies to me " . Everyone

has been very appreciative to have accurate and well explained

information provided to them.

I hope this helps.

take care

Shireen Mohandes

London, England

> >

> > Hi there, My 45 days daughter has Blepharophimosis. she was born

on

> > Oct. 9th in 2007 in beijing of China. she has two major features

> > (note:not four major feather):blepharophimosis, ptosis. we were

> > wondering if there is anyone else with this syndrome?

> >

> Hi,

> My son has BPES; he has only 3 of the recognised 4 major features;

> ptosis, epicanthal folds and telecanthus (widely spaced eyes). His

eyes

> are of 'normal' range width. I have been looking for information on

> people with BPES with less than all four 'symptoms'.

>

> Welcome to the forum; everyone here has been really helpful and

nice to

> me so far (I am new too!). Best Wishes

> Cretemum

>