Re: Any Canadians out there?

[Guest guest]

To all of the new members that have joined recently. Welcome to the group, a very warm welcome is heading your way to you from all of us. Im Clare (37) from Herts Uk, my daughter (10) and I have BPES, my husband and son dont. I was the first to have it. You will find this site informative and caring and a wealth of experience, even if sometimes its just to help with info or a virtual hug. It does become clearer as time goes on, and you will all be absolutely fine, the children will grow into healthy happy confident adults, with your help (i feel this is the case for kids with or without BPES) As an adult I found discovery of this site very emotional, happy, sad, scared, and lots and lots of tears, so for those of you in this siutation, keep talking, keep asking and keep sharing. This is the most amazing site. - thank you

Shireen. For the new lady in Canada, the words and the unkown are scary, your daughter will be fine living with BPES, as far as I know if you dont have the signs of BPES, you dont have it. Take care and welcome... Clare Teale - herts UK gowoo_maverick <kcannings@...> wrote: Hi there! Our third daughter (2 1/2 months old) was just diagnosed with BPEI. To our knowledge, my husband and I as well as our other two daughters do not have the syndrome - we are still waiting to see a Geneticist. My doctor and pediatrician had never heard of the syndrome and we actually found it online and were sure it was what Kamryn had and literally had to battle to get anywhere. We

finally made it to Children's Hospital in Vancouver and saw Dr. Lyons. We are overwhelmed and feel very much in the dark - this seems like a foreign language to us. I have been reading the postings for awhile now as well as articles and any other information we can get our hands on, but if there are any other Canadians out there that can share their experiences with us or have any advice, PLEASE email!! Has anyone dealt with Dr. Lyons in Vancouver? Any help or direction is greatly appreciated!! Thanks for listening.

New Messenger with Voice. Call regular phones from your PC for low, low rates.

[Guest guest]

Hi Clare,

I'm . Thanks so much for the welcome! We are thankful to have

found this site and have learned soooooo much already. It is very

comforting to know that the feelings we have felt to this point

are " normal " so to speak. We have lots of questions, so it is great

to have a place to voice them now. I posted a few pictures of our

sweet little girl under " Kamryn " .

Would love to hear from any Canadians still regarding your

experiences within Canada and if anyone has dealt with Dr. Lyons

from Children's Hospital in Vancouver. Thanks a bunch.

> Hi there! Our third daughter (2 1/2 months old) was just

diagnosed

> with BPEI. To our knowledge, my husband and I as well as our

other

> two daughters do not have the syndrome - we are still waiting to

see a

> Geneticist. My doctor and pediatrician had never heard of the

> syndrome and we actually found it online and were sure it was what

> Kamryn had and literally had to battle to get anywhere. We

finally

> made it to Children's Hospital in Vancouver and saw Dr. Lyons. We

are

> overwhelmed and feel very much in the dark - this seems like a

foreign

> language to us. I have been reading the postings for awhile now

as

> well as articles and any other information we can get our hands

on,

> but if there are any other Canadians out there that can share

their

> experiences with us or have any advice, PLEASE email!! Has anyone

> dealt with Dr. Lyons in Vancouver? Any help or direction is

greatly

> appreciated!! Thanks for listening.

>

>

>

>

>

>

[Guest guest]

hi there my name is tonikka and my son Lynden is now 8 1/2 and he is the only one in our family to have Bleph, we live in Edmonton (Alberta) there are actually a few of us who live here and surrounding and we all share the same doctor and have had surgeries by him..... his name is Dr and is extremely familiar with the syndrome, if you need any contact numbers let me know and I can set you up with some.... including geneticists or even just for a second opinion.

I remember when my son was born I was overwhelmed due to the fact that he had his first surgery at 5 weeks of age..... he was diagnosed and had everything done within a week. that was scary for me.

well I hope you can get some answers from this group. there is a vast variety of BPEI and many many stories and experiences.

talk to you soon

hang in there

tonikka

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of gowoo_maverickSent: March 27, 2006 11:11 AMblepharophimosis Subject: blepharophimosis Any Canadians out there?Hi there! Our third daughter (2 1/2 months old) was just diagnosed with BPEI. To our knowledge, my husband and I as well as our other two daughters do not have the syndrome - we are still waiting to see a Geneticist. My doctor and pediatrician had never heard of the syndrome and we actually found it online and were sure it was what Kamryn had and literally had to battle to get anywhere. We finally made it to Children's Hospital in Vancouver and saw Dr. Lyons. We are overwhelmed and feel very much in the dark - this seems like a foreign language to us. I have been reading the postings for awhile now as well as articles and any other information we can get our hands on, but if there are any other Canadians out there that can share their experiences with us or have any advice, PLEASE email!! Has anyone dealt with Dr. Lyons in Vancouver? Any help or direction is greatly appreciated!! Thanks for listening.

[Guest guest]

Hi Tonikka,

I'm . I would really appreciate the contact number of Dr.

(and email if you have it). Why did your son Lynden have to

have the surgery so early? Is the only reason for early surgery

possible impairment of vision or are there other factors involved?

Does your son have it in both eyes? How is he doing now? Will he

have to have any other surgeries?

So many questions! Thanks so much for your help!

Take care,

>

> hi there my name is tonikka and my son Lynden is now 8 1/2 and he

is the

> only one in our family to have Bleph, we live in Edmonton

(Alberta) there

> are actually a few of us who live here and surrounding and we all

share the

> same doctor and have had surgeries by him..... his name is Dr

and is

> extremely familiar with the syndrome, if you need any contact

numbers let me

> know and I can set you up with some.... including geneticists or

even just

> for a second opinion.

>

> I remember when my son was born I was overwhelmed due to the fact

that he

> had his first surgery at 5 weeks of age..... he was diagnosed and

had

> everything done within a week. that was scary for me.

>

> well I hope you can get some answers from this group. there is a

vast

> variety of BPEI and many many stories and experiences.

>

>

> talk to you soon

>

> hang in there

>

> tonikka

>

>

>

> Tonikka and Chris

> blepharophimosis Any Canadians out there?

>

>

> Hi there! Our third daughter (2 1/2 months old) was just

diagnosed

> with BPEI. To our knowledge, my husband and I as well as our

other

> two daughters do not have the syndrome - we are still waiting to

see a

> Geneticist. My doctor and pediatrician had never heard of the

> syndrome and we actually found it online and were sure it was

what

> Kamryn had and literally had to battle to get anywhere. We

finally

> made it to Children's Hospital in Vancouver and saw Dr. Lyons.

We are

> overwhelmed and feel very much in the dark - this seems like a

foreign

> language to us. I have been reading the postings for awhile now

as

> well as articles and any other information we can get our hands

on,

> but if there are any other Canadians out there that can share

their

> experiences with us or have any advice, PLEASE email!! Has

anyone

> dealt with Dr. Lyons in Vancouver? Any help or direction is

greatly

> appreciated!! Thanks for listening.

>

>

>

>

>

>

[Guest guest]

I DO NOT KNOW HOW MUCH THEY HANDLE cANADIAN, BUT I BELONG TO A GROUP DEALING

WITH Ltd AND sOC SEC ISSUES

Disinissues ;

-- [ ] Any Canadians out there?

Or specifically anyone from BC who has had to go on EI, long term

disability through their insurance provider, government disability

etc. I'm currently on EI and beginning the process with my insurance

co. and I'm looking for any tips or pitfalls to avoid. Thanks folks!