Re: My first posting here ...

[Guest guest]

Hi,

I am a member of this group, my daughter is 4 and has Bleph.

We live in Iowa, USA. I jumped when I read in your letter that you are

from Grenoble!

My sister and brother and their 3 daughters live in Grenoble!! Actually,

they live in Saint Ismier-that is close to Grenoble, isn't it?

He works for Catapillar and originally, they are from Peoria, Illinois,

USA.

My sister stays at home with their baby. (their daughters do not have

Bleph).

I visited Grenoble in 2002. It is a pretty town and the mountains

behind it are wonderful. We hope to visit again this year.

We are learning so much from the letters in this support group. I save

many of them that discuss the medical condition, types of surgeries, the

fertility issue etc. Our daughter has not had surgeries yet, the doctor

says she will start when she is about seven years old, she is four now.

Her eyes open enough that she can see, but she has glasses. She got a

lot of stares from people when she was a baby and people still stare

now, but she doesn't notice it yet. We do not know if she has Type I or

Type II of Bleph. And we will have her tested for this when she is a

little older to see if she will have any fertility problems.

Will you find out if you have Type I or Type II? If you are considering

having children, you may want to find out soon so you can weigh your

options.

You will find out much from this group. I encourage you to read many of

the letters, especially from Rob , he seems so " studied " in this.

As a mom, I try to give my girl a positive view of herself, that her

beauty is within herself (which is difficult since she loves

" Barbies " -which seem perfect)..but I know my girl will find inspiration

from the older women on this support group as she grows up.

Your English is very good..I hope to chat with you some more. Bonjour.

(that's the limit of my French--ha, ha)

Copied: my sister in St. Ismier

blepharophimosis My first posting here ...

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.

[Guest guest]

ce

Thank You for sharing. I too was born with BPEI. Glad your hear now.

fidgi_avesque <thalie38@...> wrote: 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.