Blepharophimosis Member Introductions


#1

Please take a moment to introduce yourself to the community. Everyone here has something to share about Blepharophimosis. For the discussion boards, we ask that you keep your full name and location private.


#2

47 blepharophimosis raised by mother unaware of condition’s effect on affect, suffered quite a lot, still consider the condition a blessing due to enhanced eye movements and cool bilateral independence of vision!


#3

Disappearing posts, disappearing forums, I can see the signs of an overcontrolling narcissist behind these “helpful community” pages. Good luck to you, sir.


#4

Founder of the TransGlobal Health Community Center at http://transglobalhealth.com


#5

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.


#6

Life is about health, family and friends, but sometimes its hard to keep focus on what is most important


#7

my son has bleph.


#8

I am a single military (in the US Air Force) mother of a two-year-old with Blepharophimosis. Tristen had the eye lid sling surgery when he was 11 months old. We currently live in Nebraska. Before this assignment, we were stationed in beautiful Alaska.


#9

I have BPES, live in London, England, and would like to be in touch with others with the same condition.


#10

BPES-enhanced. Father of 1. Oz.


#11

I am 37, I have BPES and had a succesful surgery (Levator-resection) one year ago. I want to follow all experiences made by group members concerning their children as I want to have a child as well.


#12

Hello, My name is Laurie and we have a daughter with BPES. Her name is Shea and she is 19 months old. We are from Wisconsin. We would like to find people in our area to learn more about BPES with their experiences.


#13

We are the parents of a 13 year old son with BPES and reside in Boulder, Colorado


#14

Our daughter has Blepharophimosis. She is 2 months old and we are just learning about it.


#15

Hello,

I am a French female. I am 34 and have BPES.

As a child, I was operated three times and I am happy not to have bigger eyes because they would be too dry.

I am concerned by infertility.

That’s all for the moment !

Claire


#16

My two year old son, Bipin, has Blepharophimosis as does my husband and his brother and sister.


#17

Hi my name is Nichola, I,m 37 years old and have Blep in my right eye which I have had surgery for 3 times, the last which was unsuccesful. I am married with 2 children Adam who is 16 and Lauren who is 13, she also has this unfortunate problem. I would Love to hear from people who manage with this problem emotionally, physically and practically. NIk x

P.s. I also think it would be good for my daughter, espechially if there are any other teenagers out there who have this problem.


#18

Hi,

i'm Nicola, a 17-year-old girl from Germany.

I have BPES Type 1, so i'm concerned by infertility. I'm the only one who has BPES in my familiy.

Nici


#19

#20

We have a 11 week old son who was just diagonsed . . . we have no idea what is in store for him.