Blepharophimosis Member Introductions


#41

Daughter with Blepharophimosis


#42

Dawn From Vegas, Nevada… daugther born with bpes syndrome onlyone in either side of family and wouldn’t want it any other way… she has 3 surgies to date she is 4 yrs old~


#43

I have BPES, and so does my 9 month old daughter.


#44

hi my name is pat. My daughter Nicola has bleph also Ohdo Syndrome with severe learning difficulties. She is 19 now.


#45

hello, i´m Laura &í´m 24 years old, i have bpes. i want to meet other people with this disease. i am from Spain, kisses


#46

HI MY NAME IS KERRY AND I HAVE A HUSBAND AND A DAUGHTER WITH BPES AND SHE IS ABOUT TO HAVE HER SECOND OP


#47

I am from Denmark and have joined this group because my daughter (4½ yrs) was born with bleph.


#48

my 16 year old son has bleph.


#49

Hi my name is April. I am from NC. Multiple members of my family and myself have BPES and are interested in finding out as much as possible about BPES.


#50

My 10 yr old granddaughter has Blepharophimosis. She could not open her eyes for the first 3 weeks after she was born. The doctors here said nothing was wrong, but we knew differently and took her to a clinic in Indianapolis. The doctors there took one look at her and made a diagnosis immediately. She has had 2 operations so far.


#51

Hi,
My name is Suzy and I am the proud mother of a beautiful four year old little girl, Liliana. Lili was diagnosed with Bleph when she was about 5 months old. Over the past few years it’s been difficult finding physicians that seem truly familiar with and experienced in treating blepharophimosis. We live in Tucson, Az and have found some help but are of course are always looking for new information and the best doctors to work with Lili when it’s necessary. She has not had any surgeries as of yet. We thought we had about another year until that came around but it looks like it may be pushed up to the near future. I am open to any information or advice anyone has to offer - in fact I am hoping for it. Thanks so much!


#52

My son and my grandaughter both were born with blepharophimosis. Not much was known when my son was born and I’m interested in finding out what new information is out there.


#53

I am 25 years old and I was born with Blepharophimosis, have had three corrective surgeries and have never met anyone else with my disorder. I just thought I would check it out!!! :smiley:


#54

Hi Name is Joyce, part of the BPES group on YAHOO. have 2 daughters with BPES.


#55

i did abit of searching online and there is not much info about it. anyone like to enlighten me about what blep is?


#56

I have a 14 year old daughter who already had surgery once at age 3 for her congenital ptosis. I am considering having the surgery again, as her droopiness has worsened.


#57

Hi, nice to meet u all. My family has many generations of bleph including myself. My sister who has the condition had 2 girls without it and my son doesn’t either, so imagine the surprise when my second, a girl did - we call her “my mini me”! We did originally believe that the males were the carriers as my uncles, dad and grandad have it and their kids did, but not my auntie’s. I have learnt that in fact there is a 50/50 chance. We are all fine and my little girl is under a consultant in Birmingham, England and will have ops when she is about 6 years old. Hope to chat to u soon.


#58

Hi - My name is Adrienne. I have a 7 week old son who has blepharophimosis. He gets it from his father (who has had 2 surgeries). His grandfather and uncle also have the condition. Until our son was diagnosed, my husbands family had never heard of the condition bleparophimosis, they had always been told it was just ptosis. This is very new to us, so we are looking to learn all about how the condition is currently treated.


#59

hi everyone, im a 16 year old born with blepharophimosis. I’ve never had correctional surgery and i just wanted to see if there was anyone else who also has bp but hasn’t had surgery for it, and i’d also like to learn about it a little more and see if surgery is possible for the future, thanks :slight_smile:


#60

my 3 and 1/2 year old grandaughter has this syndrome and we are thinking of her having surgery