My first posting here ...

[Guest guest]

Hi !!!

I am so proud to be here and also to discover this support group !

Let me introduce myself.

I am a french young woman aged 33. I live in Grenoble, a small city

in the french Alps, where you can ski or enjoy the snow pleasures.

I was born with blepharophimosis and I only discovered the rare

disorder BPES this spring when my boy friend and I decided to connect

us to the Internet.

My parents did not know about this disorder. When I was born doctors

said 'your daughter has small eyes with an eyelid malformation', that

is all they said to them. Yet I had all the particularities of this

disorder. I was first operated on for strabism when I was 5 and when

I was 7 they dis something for my eylids ... but the result today

does not satisfy me. I wear glasses and the bright light distrubs me

a lot. I shed tears fot years and years ...

Two days ago, I took a train to Paris, to see two doctors in order to

confirm or not the diagnosis ...

this was so so important for me.

They took me some blood for analysis and said it was probably BPES.

I am so happy, my whole life is going to change !

One cannot imagine how much, we, BPES, suffer from this disease ...

It is very important for me too to discover pictures of you, parents,

children to give you and to receive for me support and most of all

share our experiences.

I was longing to see people having the same yes because I suffered a

lot when I was young.

Please excuse my english, I studied it at University but it is a long

time since I have not written in this language.

Fortunatelly, I hope I will be able to 'speak' with less mistakes

soon !!!

My name is ce.

I hope you will write me to my email or here if you like too ...

Thanks for reading me.

ce.