Hello

[Guest guest]

Hi ,

Thanks for your welcome. I have seen the pictures of your boys they are fantastic and the surgery looks amazing. Mia also wears glasses as she is significantly long sighted however she manages to keep them on ok. I never had the brow suspension surgery but it seems to give fabulous results. I have had the epicanthal folds removed at age 3, a lid lift at age 7 and a lower lid lift at 10 . I am generally very pleased with the results.

Thoughts will be with you on Friday.

e

Re: blepharophimosis Hello

e,Welcome to the group. I too am 32 and come from a family of BPES. I livein Ohio. My father had it as does my grandfather. I have it and have passedit on to 2 of my sons. My oldest son, who will be 11, is finished with hissurgeries, unless the surgereon feels he needs to have the bridge of hisnose raised. His results were fantastic. My youngest son, who will be 6 onthe 22nd, has had 3 surgeries so far and is going in this Friday for hisbrow suspension. The surgeon has already told me that he will need at leastone more surgery when he is a teenager. He too has a very flat bridge, butnothing has been said about that yet. It's so flat his glasses won't evenstay up.Again, welcome to the group.

[Guest guest]

Hi Rebekah

Welcome to the group. Have a look at the section called "database" and you will see listed some of the members of the group, with where they live. You can click on the little arrow above "country" to sort by country.

It is very encouraging to see our group expand, I only wish that we did not live so far away from each other so that it would be easier to meet up.

Shireen, London, England

-----Original Message-----From: beckao2000 [mailto:rebekah.o@...]Sent: 24 July 2004 05:13blepharophimosis Subject: blepharophimosis HelloHiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hello, Rebekah, Like you Im new to this site. My daughter and I both have BPES type 2. I have only met 1 adult and 1 child with BPES.

This website is a different world isnt it. Its excellent.

Clare Teale

Hertford, Englandbeckao2000 <rebekah.o@...> wrote:

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Welcome to the group Rebekah. I come from a family with BPES. I have it

and so do 2 of my 3 children. My father had it, my grandfather has it and

it goes on down the line. It is reassuring to be on this group. Again,

welcome.

Cincinnati, Ohio

[Guest guest]

Hi Rebekah.. I am Leah.. I live in Hastings NZ and i have a son with BPES.. he is 5.. His name is Ethan and you can check out his photos on the site.. the Ethan with his brothers photos.. its pretty confusing with the two Ethans aye Leanne... Where in NZ are you from?? The site is awesome aye? you can email me direct if you like... leahs_male@clear .net.nz

welcome

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi Greg,

Email me directly at lee10@.... I'm not very good on computers. This way I can "reply" right back to you. Or, feel free to phone me at 623-977-6787. Remind me immediately to phone you right back. I have an unlimited long distance plan.

I don't check my emails regularly so phoning would be best for me. Best time. Weekends after 11:00 AM Arizona time.

in Arizona

[Guest guest]

Hi Rebekah

I am and I live in Glasgow, Scotland. I have BPES, my sister

has it and our dad has it. My son and my sister's daughter also have

it.

Nice to meet you.

> Hi

>

> My name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have

> type 1 BPES and am really interested to hear from anyone and

> everyone. I have only heard from one person ever who has BPES, and

> that was this morning. She was the one who told me to join this

> group.

> So, to hear from anyone would be really great.

>

> Regards

>

> Rebekah Omelvena

[Guest guest]

Howdy Rebekah my name is Tonikka and I have a son Lynden who is 6 and has type 2 BPES, we live in Canada welcome to the group we hope you enjoy talking to everyone.

Tonikka

-----Original Message-----From: beckao2000 [mailto:rebekah.o@...]Sent: July 23, 2004 10:13 PMblepharophimosis Subject: blepharophimosis HelloHiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi Rebekah, my husband and I have a 20 Month old baby girl with bpes. The first we ever heard of such a syndrome. As aways its great to see 'newbees' to the group. Where abouts North Island are you? We are in Auckland and very interested in meeting up with other kiwis!

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi . I am 24 yrs old. I live in NorthTaranaki, but am coming up to Auckland in the not too distant future. I will stay in contact and perhaps we could meet up somewhere. I am the only one in my family with BPES and never knew there were more people in NZ with this condition, until last week! It is great to know I am not alone, especially since finding out 2 months ago that I have Premature Ovarian Failure linked to BPES. Its the best thing I could have done was to join this group. How is you little girl? It must all be pretty daunting for you.

Anyways, I shall keep in touch.

Rebekah

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hey ,

> I am and I live in Glasgow, Scotland. I have BPES, my sister

> has it and our dad has it. My son and my sister's daughter also have

> it.

My father was from Glasgow. I have BPES, he had it very mildly, his

sister (my aunt) had it, etc. We're not related, are we? That would be

too spooky.

Rob (son of )

[Guest guest]

Hi Rebekah! How are you? My husband and I would love to meet with you when you're next in Auckland. Most definately keep in touch and let us know when etc.

Alyssa (our 20 Mth old) is good thanks. She is scheduled for Epicanthus surgery next thursday. Her 3rd surgery date. The last 2 she was not well enough with Asthma etc for surgery. With winter and so many bugs around I am keeping her like a hermit at home, in the hope to keep her well so that this time surgery will go ahead. So far so good! Her surgery is being performed at the Auckland Eye Clinic. Would love to hear more about the surgeries you've had?

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi and Bob,

Its Leanne down in CHCH, nice cold weather ha! It's horrible:( Keep us posted with Alyssa's surgery next week, and post pix if you can:) Ethan had his 18 mth check up today, went well, they checked his eye sight, all good luckily:) He is thinking he may do a temp ptosis lift when he is 2, in 6 mths! that was a surprise as he has always said before about waiting til about 4ish, but he thinks because his top eyelid doesn't move up enough that a ptosis lift would be good, 6 mths isn't far, Did you see a documentary the other week on facial birth abnormalities? he did the surgery on a ladies eyes that had a severe facial abnormality, his name is Dr Weatherhead, anyways...Keep us updated on next week....Bye.

Leanne and family.

-- Re: blepharophimosis Hello

Hi Rebekah, my husband and I have a 20 Month old baby girl with bpes. The first we ever heard of such a syndrome. As aways its great to see 'newbees' to the group. Where abouts North Island are you? We are in Auckland and very interested in meeting up with other kiwis!

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi ,

There is a date error coming in your messages (Year shown as 2094!!!) which makes the message go at the end of my file and I have to search for it.

Check it out and correct it please.

Kind regards

deepakbobjnr <bobjnr@...> wrote:

Hi Rebekah! How are you? My husband and I would love to meet with you when you're next in Auckland. Most definately keep in touch and let us know when etc.

Alyssa (our 20 Mth old) is good thanks. She is scheduled for Epicanthus surgery next thursday. Her 3rd surgery date. The last 2 she was not well enough with Asthma etc for surgery. With winter and so many bugs around I am keeping her like a hermit at home, in the hope to keep her well so that this time surgery will go ahead. So far so good! Her surgery is being performed at the Auckland Eye Clinic. Would love to hear more about the surgeries you've had?

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi Rob

I dont know if we are related or not to be honest. My dad was an only child. My dad has traced his family tree back and I will ask him if there is any s.

Where do you stay now?

Rob <rawatson@...> wrote:

Hey ,> I am and I live in Glasgow, Scotland. I have BPES, my sister > has it and our dad has it. My son and my sister's daughter also have > it.My father was from Glasgow. I have BPES, he had it very mildly, his sister (my aunt) had it, etc. We're not related, are we? That would be too spooky.Rob (son of )

[Guest guest]

Hey ,

> I dont know if we are related or not to be honest. My dad was an

> only child. My dad has traced his family tree back and I will ask

> him if there is any s.

My father had four sisters, so none of them would be s after being

married. One of them had BPES, and she had a son (Not sure of his name.

? Don't quote me on that. Don't know her married name, I'll ask

mum). Some of the other sisters also came to Australia (Sydney - and

Perth?), some went to Canada, I believe.

> Where do you stay now?

I live in Sydney, Australia.

Rob

[Guest guest]

Hi rebekah

welcome to the group i have a daughter that has bpes she is 3 yrs old and

doing pretty good with everything

lois whitehorse ,yukon ,canada

>From: Clare Teale <clareteale@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis Hello

>Date: Sat, 24 Jul 2004 02:13:32 -0700 (PDT)

>

>Hello, Rebekah, Like you Im new to this site. My daughter and I both have

>BPES type 2. I have only met 1 adult and 1 child with BPES.

>

>This website is a different world isnt it. Its excellent.

>

>Clare Teale

>Hertford, England

>

>beckao2000 <rebekah.o@...> wrote:

>Hi

>

>My name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have

>type 1 BPES and am really interested to hear from anyone and

>everyone. I have only heard from one person ever who has BPES, and

>that was this morning. She was the one who told me to join this

>group.

>So, to hear from anyone would be really great.

>

>Regards

>

>Rebekah Omelvena

>

>

>

>

[Guest guest]

Hi Leanne, sorry its taken ages to reply but have been away for the last couple of nights. I will try and tell you about the surgeries I have had, but I have no recollection of the ones I had when I was a toddler. I do have a copy of the doctors notes in front of me but there writing is really hard to read. Anyways, my first was at 3yrs where they "corrected blepharphimosis by 'jumping man' incision with division of medial palpebal ligament and shortening with attachment to nasal something", at 4yrs I had the correction of bilateral ptosis (lid fold). At 12yrs I had correction of prominent ears, cartilage augemtation to radix & supraorbital ridge, and lateral supercillary brow lift. Then at 17yrs I had a forehead, glabella and dorsal nasal cranioplasty. I had another operation that same year which was a costal cartilage grafting to congenitally enophthalmic right orbit (in english, I had cartilage removed from my ribs and placed behind the right eyeball to bring the eyeball forward more, by 2-3mm). 6 months later I had the same operation on the left eye as well as the right eye operated on again to try and bring the tear duct closer to the eyeball to help with the watering of the eyes. A year later I had Bilateral ptosis repair by levator advancement and bilateral medial canthoplasty. (Deep ligament reconstitution by Mitek anchor) on both eyes. Thats the last operation I had, and am actually still on the waiting list to have the left eye operated on for the watering of the eyes. Mum and I were always told that there wasn't much the doctors could do while I was young as the bones weren't fully developed (you know, still heaps of growing to do). The operations I had when I was older, where pretty intense, but have really helped with my appearance.

However, I think I have babbled on, so I'll let you absorb all I have written.

Bye for now.

blepharophimosis Hello

HiMy name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have type 1 BPES and am really interested to hear from anyone and everyone. I have only heard from one person ever who has BPES, and that was this morning. She was the one who told me to join this group.So, to hear from anyone would be really great.RegardsRebekah Omelvena

[Guest guest]

Hi Rob, Hows things on Australia?

I have asked my Dad and I dont think we are related. I didnt think so, because his mum lived in India for a while and then Dad was born in England. That would have been freaky though!

See you

Rob <rawatson@...> wrote:

Hey ,> I dont know if we are related or not to be honest. My dad was an> only child. My dad has traced his family tree back and I will ask> him if there is any s.My father had four sisters, so none of them would be s after being married. One of them had BPES, and she had a son (Not sure of his name. ? Don't quote me on that. Don't know her married name, I'll ask mum). Some of the other sisters also came to Australia (Sydney - and Perth?), some went to Canada, I believe.> Where do you stay now?I live in Sydney, Australia.Rob

[Guest guest]

Hi Rebekah welcome to the group. Like you, I am fairly new to the

group & yes, weeks & months go by when I don`t check in but I always

read all the messages I`ve missed.

I was born with BPES, the first in my family, & I now have one

daughter also with BPES, who will, more than likely pass it on to her

children. (We are hopefull she will have them!) She is 17yrs old & we

were never able to have more. I had several ops when I was younger -

resonably `successful` - & has had a couple.

I always thought I was the `only one with the funny eyes in the whole

wide world` when I was growing up so how fantastic to find this site

a few months ago - THANKYOU ALL!

We live in Waihi NZ. Do you know where that is? Near Tauranga &

Thames on the other side of the island to you! Have you found any

info on premature menopause yet?

Bye for now

Maree

> Hi

>

> My name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have

> type 1 BPES and am really interested to hear from anyone and

> everyone. I have only heard from one person ever who has BPES, and

> that was this morning. She was the one who told me to join this

> group.

> So, to hear from anyone would be really great.

>

> Regards

>

> Rebekah Omelvena

[Guest guest]

Hi Maree, lovely to hear from you. I am the only one in my family that has BPES. I haven't yet found anything on premature menopause yet, except a book called "The Premature Menopause Book, when the change of life comes to early", which I have purchased through mail order and haven't received yet. But I will keep looking, there must be something on the net.

Anyways, will catch you later

Rebekah

blepharophimosis Re: Hello

Hi Rebekah welcome to the group. Like you, I am fairly new to the group & yes, weeks & months go by when I don`t check in but I always read all the messages I`ve missed. I was born with BPES, the first in my family, & I now have one daughter also with BPES, who will, more than likely pass it on to her children. (We are hopefull she will have them!) She is 17yrs old & we were never able to have more. I had several ops when I was younger - resonably `successful` - & has had a couple. I always thought I was the `only one with the funny eyes in the whole wide world` when I was growing up so how fantastic to find this site a few months ago - THANKYOU ALL!We live in Waihi NZ. Do you know where that is? Near Tauranga & Thames on the other side of the island to you! Have you found any info on premature menopause yet?Bye for nowMaree> Hi> > My name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have > type 1 BPES and am really interested to hear from anyone and > everyone. I have only heard from one person ever who has BPES, and > that was this morning. She was the one who told me to join this > group.> So, to hear from anyone would be really great.> > Regards> > Rebekah Omelvena

[Guest guest]

Hi Rebekah

here is a good site:

http://www.daisynetwork.org.uk/

It has lots of links. Hope it will help you.

Shireen

-----Original Message-----From: Rebekah Omelvena [mailto:rebekah.o@...]Sent: 04 August 2004 23:01blepharophimosis Subject: Re: blepharophimosis Re: Hello

Hi Maree, lovely to hear from you. I am the only one in my family that has BPES. I haven't yet found anything on premature menopause yet, except a book called "The Premature Menopause Book, when the change of life comes to early", which I have purchased through mail order and haven't received yet. But I will keep looking, there must be something on the net.

Anyways, will catch you later

Rebekah

blepharophimosis Re: Hello

Hi Rebekah welcome to the group. Like you, I am fairly new to the group & yes, weeks & months go by when I don`t check in but I always read all the messages I`ve missed. I was born with BPES, the first in my family, & I now have one daughter also with BPES, who will, more than likely pass it on to her children. (We are hopefull she will have them!) She is 17yrs old & we were never able to have more. I had several ops when I was younger - resonably `successful` - & has had a couple. I always thought I was the `only one with the funny eyes in the whole wide world` when I was growing up so how fantastic to find this site a few months ago - THANKYOU ALL!We live in Waihi NZ. Do you know where that is? Near Tauranga & Thames on the other side of the island to you! Have you found any info on premature menopause yet?Bye for nowMaree> Hi> > My name is Rebekah Omelvena, I am 24yrs old and live in NZ. I have > type 1 BPES and am really interested to hear from anyone and > everyone. I have only heard from one person ever who has BPES, and > that was this morning. She was the one who told me to join this > group.> So, to hear from anyone would be really great.> > Regards> > Rebekah Omelvena

[Guest guest]

Welcome, Briar!

Sorry that you have so many diagnoses, but glad to have you aboard.

Are you saying that your celiac disease makes it difficult to find

things you can and like to eat or that you suffer with it even though

you have eliminated gluten from your diet?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hello

>

> Hello thank you for letting me join. I have multiple autoimmune

disorders, RA being one of them. The others are Hashimotos Thyroiditis,

Sjogrens, Raynaud, Coeliac. The Coeliac has left me with multiple food

intolerances which I find very hard to cope with. I have lost a lot of

weight over a short time but try to do my best. Enough of my problems. I

hope I can be of help to you all.

>

> Hope you are keeping as well as you can.

>

> Best wishes,

>

> Briar

[Guest guest]

Briar,

I hope WE can be of help to YOU!! This is an amazing group to be in.

They are a wonderful resource. Take care......Marina in Ohio

[Guest guest]

http://f1.grp.fs.com/v1/UAR5QeRxXx0QroYfGzAJ4Om8SqfA1Mw7YrT4Lslod

GgIbLTrNBlvTNl1ZHCDhPrO2j_Qlt2gvSAYygTLjc4/Help%

20Folder/Handouts/Hannah%27s%20Info%20Sheet.doc

Files/Help Folder/Handouts/Hannah's Info. sheet

among others!

Good luck today Kristyn!

Sue

>

> I have been so busy I haven't been able to get on for awhile, but I

> just saw that there was a handout that someone gave to their

> doctor. I am going to my doctor today and would love to know if

> that handout is here in the Files area. Can anyone point me in the

> right direction?

> Thanks,

> Kristyn (mom of Skylar-plagio)