SV: Forgive me, I'm new to all this

[Guest guest]

Hello,

I`ll start by saying that

my english is not very good. I come from Denmark and this is the only site

where I think I can get som help or support. I have a son with BPES and he is

just 3 month old. He is the only one in our family and there is no history in

any of our families with BPES. In the beginning I was very sad, but know I

think he is the most beautifull baby-boy. But I cant find anybody In Denmark

with this same disease. And the doctors have almost as many questions as we do.

Is it true that we have to wait with the surgery intill he is about  3 years? I

hope in time I can help some of you with your questions, but now I`m still at

bit confused. Bye bye for now, I will for sure return later.   

Fra:

blepharophimosis [mailto:blepharophimosis ] På vegne af donna haskins

Sendt: 30. juni 2006 14:13

Til:

blepharophimosis

Emne: Re: blepharophimosis

Forgive me, I'm new to all this

Hi Richie! You have definately come to the right place.

Welcome to this wonderful group of amazing people and supporters.

Your story was beautiful and heartfelt. Thank

you for sharing it.

I just recently joined this " family " because I had many anxieties and

concerns about BPES. My 12 year old daughter has experienced some

of the same ridicule you have, and the pain was killing me. She is the only

person we have ever known to have this condition, so it is reassuring to know

that we are not alone. Through this group, I have gained insight,

knowledge, support, confidence, and most importantly, friends. Now,

you will too.

Like you, my daughter always felf that she was the only person in the

world with this syndrome. I recently told her that there is a whole

on-line support group for people with this condition. That in itself made

her feel better, because it proved that she is not alone. I haven't let

her on this site yet, but I have shared a few stories and photos with

her.

I am interested in hearing about your first surgery as an adult, and how it has

changed both your appearance and vision. Do you wish you had done it

sooner?

Again, welcome aboard the Blepharofamily!

rnr_kelly

<rnr_kelly@...> wrote:

Hello

My name is Richie, and I was overwhlemed to find this support group!!

This explains why I am about to write this saga. So I apologise to

all who read it, and understand those who close it after a couple of

lines, but I just need to get a couple of things off my chest before

I start talking to you all.

I'm 36 and up to the age of 22 I had never even seen anyone else

with Blepharophimosis (forgive me if I get any spelling wrong)

unless they were my sister, my dad or 2 of my aunties on my dad's

side.

Even at that time I never even new the name for what we had. No one

on my dad's side ever wanted to talk about this, and this seemed

normal until I started moving around the country. People would ask

me what was up with my eyes, and I would tell them that I was short

sighted and that's why I wore glasses!!!!! But I knew what they

really meant.

I found out what it was called at age 29, and looked into it a

little but there didnt seem to be much out there at the time.

I work in a major Hospital in Liverpool, and have actully married

the Office Manager from the Ophthalmology Dept. She says it was so I

could find out more information, easier. I keep telling her it was

for the money!

We had a little boy, ph in November of 2003, and even though we

knew it was 50/50 whether or not he would have this, we went ahead

and did it. Of course he has it, but when I used to watch just after

he was born, all I used to see was the most beautiful little thing

that I had ever seen and could not believe that I had a part in

bringing him into this world!

He is now 2 and a halfish and even now, when I see people that I

have not seen in a while and show them pictures of him, (yes I am a

typical baby bore), I am still confused how they can say that he is

a cutie or he's lovely, followed by the statement that he is the

spitting image of me! Honestly, I am not looking for sympathy, I am

just remembering my childhood and how strangers and even people I

knew would treat me and my sister because of the way we looked.

I even get some of the same feelings of dread that I had as a child,

when I see people staring at him when we are out n about. I am

frightened that he will go thru what I went thru and this upsets me.

Knowing this, I myself had an operation last year were a piece of

ligament was removed from my leg and used to suspend the upper

eyelid on each side. I felt the benefits pretty much straight away,

as I noticed that my head was not held back as much.

When my wife and I talk about having corrective surgery for ph,

we are scared, with the usual thoughts that I am sure you all have

had. But seeing some of the pics that hve been posted it adds to our

combined strength and conviction that this is the correct thing to

do.

I will finish now, and hope that I have not bored you all to sleep.

I would welcome any msgs back and will check for these tomorrow.

Take care

Richie

 

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