new member

[Guest guest]

Wow Ginny, it's been so long since I've seen hide or

hair of you!!! How are you??? HOw is you newest

addition ( which if memory serves correct is about a

year old or more)? is great, his patching

brought him from nearly blind to 25/20 ( he hasn't

patched for 6 months and we go next monday to see how

his vision held up). His need for patching was

because of his left eye drooping more than the right

as well. It's a tough go to start with..but they

learn to get used to the patch being there. And

truthfully...I wore a patch at the same time as we

started ... just so he didn't feel different. It

is incredibly annoying and disorienting. I understand

why children detest them so much!!! We too had the

problem of the skin irritation... we were advised to

change patches once in a while. The results of

patching are very good as long as you can start young

enough. My son's Opth. said that anywhere before the

ages of 6 or 7 ( approx) is the ideal time. He will

still need glasses at some point in his life we think

as he is developing astigmatisms. Does anyone know if

this is typical of Bleph? His right eye ( the

stronger of the 2) has the more developed astigmatism.

His doc is quite puzzled with it..but seems to be ok

with it as long as his vision holds where it is.

Take Care

a

--- Ginny Harper <gharper05@...> wrote:

> Hi ,

>

> My name is Ginny and I've got 4 children...one with

> BPES. He name is and she's 4 1/2. She's

> had one surgery (a year ago) and that was the

> " transnasal wiring " procedure. I wanted to respond

> to your question about patching... I know that each

> parent out there has differing opinions about the

> advice their doctors give them. For ,

> patching has been a good thing. When she started

> patching, she had to wear the patch 8 - 10 hours a

> day. The whole idea behind patching is to patch the

> " stronger eye " to make the brain use the " weaker

> eye. " She's now down to only wearing the patch for

> about 3 hours each day. Her " lazy eye " (amblyopia -

> I think is the correct term) has gotten

> significantly better and so has her vision. There

> are many brands of eye patches out there and we've

> tried them all, I think but...the brand we use is

> Coverlet Jr. Size Eye Occlusor. It seems to come

> off a bit easier when it's time to remove the patch

> - without ripping off skin and eye brows or

> leaving a red mark. I know it must sound terrible,

> but in my opinion patching works.

>

> Ginny Harper <><

>

>

> rainamint@... wrote:

> hello suzy

> my experience with Aedan's doctors showed me

> that each doctor has a

> different opinion because of their different

> specialties. Aedan's ptosis was very

> severe so that the opthomologist was afraid of his

> visual development at age

> 10 days. Whereas the surgeon wanted to wait as long

> as possible, for in her

> opinion it was a very high risk to do surgery at

> such a tender age. and! the

> two surgeons i worked with also had different

> opinions! Ahhhhh! So, Aedan had

> the Ptosis corrected at 2 and a half months old.

> We don't know how long

> this will hold. He is now doing wonderful (He is

> twenty months). One eyelid is

> weaker than the other and droops a bit lower.

> though sometimes they are very

> equal. I cant find a pattern of why this is so.

> His opthamalogist wants me

> to patch is strong eye (much easier said thatn done

> at his age) Though

> honestly I haven't noticed that it helps open his

> weak eyelid more. Has anyone had

> experience with the patching? Anyway as to the

> other surgereys the surgeon

> seems to want to wait as long as possible or never.

> But for Aedan's emotional

> and social well being we think it is a good idea.

> he gets a lot of stares and

> unwelcome comments. right now he is oblivious to

> them but he will understand

> soon. How can I help him with this? Any one have

> advice from experience?

> Thanx .

>

>

>

[Guest guest]

Hi

I would also like to add some words on the patching.

I patched my eye as well in the beginning. And having one lazy eye,

gave me a good idea of the hard time she goes through.

We can only get 3M patches, which are hard to remove but we found a

trick to overcome this. Nina gets to take of the … (don't know the

name of the?) and then we put the patch on the top of her hand

before putting it over her eye, then it comes of more easy after the

4 hours of patching which we do. Believe it or not, but it actually

makes a nice ritual, which she likes and even asks for (!) together

with her pair of glasses every morning… Don't know how long that

will last!

And I definitly think the patching is making her left eye work

harder.

Good luck, Bernice

> hello suzy

> my experience with Aedan's doctors showed me that each doctor

has a

> different opinion because of their different specialties. Aedan's

ptosis was very

> severe so that the opthomologist was afraid of his visual

development at age

> 10 days. Whereas the surgeon wanted to wait as long as possible,

for in her

> opinion it was a very high risk to do surgery at such a tender

age. and! the

> two surgeons i worked with also had different opinions! Ahhhhh!

So, Aedan had

> the Ptosis corrected at 2 and a half months old. We don't know

how long

> this will hold. He is now doing wonderful (He is twenty months).

One eyelid is

> weaker than the other and droops a bit lower. though sometimes

they are very

> equal. I cant find a pattern of why this is so. His

opthamalogist wants me

> to patch is strong eye (much easier said thatn done at his age)

Though

> honestly I haven't noticed that it helps open his weak eyelid

more. Has anyone had

> experience with the patching? Anyway as to the other surgereys

the surgeon

> seems to want to wait as long as possible or never. But for

Aedan's emotional

> and social well being we think it is a good idea. he gets a lot

of stares and

> unwelcome comments. right now he is oblivious to them but he will

understand

> soon. How can I help him with this? Any one have advice from

experience?

> Thanx .

[Guest guest]

Ha, ha, this is funny. I just looked up Coverlet Jr. Size Eye

Occlusor on the internet. It is the same as we use, but over here it

is just called: Opticlude.

> > hello suzy

> > my experience with Aedan's doctors showed me that each

doctor

> has a

> > different opinion because of their different specialties.

Aedan's

> ptosis was very

> > severe so that the opthomologist was afraid of his visual

> development at age

> > 10 days. Whereas the surgeon wanted to wait as long as

possible,

> for in her

> > opinion it was a very high risk to do surgery at such a tender

> age. and! the

> > two surgeons i worked with also had different opinions!

Ahhhhh!

> So, Aedan had

> > the Ptosis corrected at 2 and a half months old. We don't

know

> how long

> > this will hold. He is now doing wonderful (He is twenty

months).

> One eyelid is

> > weaker than the other and droops a bit lower. though sometimes

> they are very

> > equal. I cant find a pattern of why this is so. His

> opthamalogist wants me

> > to patch is strong eye (much easier said thatn done at his age)

> Though

> > honestly I haven't noticed that it helps open his weak eyelid

> more. Has anyone had

> > experience with the patching? Anyway as to the other surgereys

> the surgeon

> > seems to want to wait as long as possible or never. But for

> Aedan's emotional

> > and social well being we think it is a good idea. he gets a

lot

> of stares and

> > unwelcome comments. right now he is oblivious to them but he

will

> understand

> > soon. How can I help him with this? Any one have advice from

> experience?

> > Thanx .

[Guest guest]

a Dubreuil wrote:

> He will

> still need glasses at some point in his life we think

> as he is developing astigmatisms. Does anyone know if

> this is typical of Bleph?

Yes, apparently they do. A quick spot of research at the amazing, magical:

http://www.pmbrowser.info/pubmed.html

just using 'blepharophimosis' as the search key, revealed the following

article (among many others):

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

4710475 & dopt=Abstract

One of the authors is a - wait for it - Mr Collin, of - guess where? -

Moorfields 'ostible. It's quite recent (2003).

I'll repeat the abstract here, bravely (but perhaps erroneously)

assuming it's OK to do so:

====

The incidence of strabismus and refractive error in patients with

blepharophimosis, ptosis and epicanthus inversus syndrome (BPES).

Dawson EL, Hardy TG, Collin JR, Lee JP.

Moorfields Eye Hospital, City Road, London EC1V 2PD, England, U.K.

A retrospective review was carried out of 204 patients with

blepharophimosis, (blepharo) ptosis and epicanthus inversus syndrome

(BPES). Of these, 94 (46%) had an autosomal dominant family history of

BPES. Forty (20%) had manifest strabismus. Of these, 28 (70%) had

esotropia, 10 (25%) had exotropia and 2 (5%) had hypertropia. Twelve

(6%) patients had nystagmus. Seventy (34%) patients had a significant

refractive error requiring spectacles. Twenty-one (30%) of these

patients had anisometropic hypermetropia and 24 (34%) had anisometropic

myopia. Forty-three patients had bilateral amblyopia and 40 had

unilateral amblyopia, with 26 (65%) of these undergoing occlusion

treatment. Of these, 14 had strabismus and refractive error, 7

refractive error only, 2 strabismus only and 3 neither refractive error

nor strabismus. We conclude that there is a higher incidence of

strabismus and refractive error in patients with BPES than in the normal

population.

====

And it looks like there's plenty more where that came from, folks.

Rob

[Guest guest]

WOOOOOOOOOHOOOOOOOOO Rob,

Well now (am smiling very broadly) I wish I had a dollar for everytime I was told and I quote " your vision diagnosis has NOTHING to do with BPES" and me saying well now sir or ma'me I do not know why but" I think" it may.

Perhaps patially its unrelated but in part it is related will be my responce now..

> A DREAM HERE <"Personally I would like to meet Mr. of The MoorFields UK" .........My insurance wont allow that tho.........hmmmmmmmmmm.

Thank You very much for the web sites and stuff...........hey anyone wanna go and celebrate with ice cream? ............LIFE IS GOOD!

Loretta in Washington State

Rob <rawatson@...> wrote: a Dubreuil wrote:> He will> still need glasses at some point in his life we think> as he is developing astigmatisms. Does anyone know if> this is typical of Bleph?Yes, apparently they do. A quick spot of research at the amazing, magical: http://www.pmbrowser.info/pubmed.htmljust using 'blepharophimosis' as the search key, revealed the following article (among many others):http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=14710475 & dopt=AbstractOne of the authors is a - wait for it - Mr Collin, of - guess where? - Moorfields 'ostible. It's quite recent

(2003).I'll repeat the abstract here, bravely (but perhaps erroneously) assuming it's OK to do so:====The incidence of strabismus and refractive error in patients with blepharophimosis, ptosis and epicanthus inversus syndrome (BPES).Dawson EL, Hardy TG, Collin JR, Lee JP.Moorfields Eye Hospital, City Road, London EC1V 2PD, England, U.K.A retrospective review was carried out of 204 patients with blepharophimosis, (blepharo) ptosis and epicanthus inversus syndrome (BPES). Of these, 94 (46%) had an autosomal dominant family history of BPES. Forty (20%) had manifest strabismus. Of these, 28 (70%) had esotropia, 10 (25%) had exotropia and 2 (5%) had hypertropia. Twelve (6%) patients had nystagmus. Seventy (34%) patients had a significant refractive error requiring spectacles. Twenty-one (30%) of these patients had anisometropic hypermetropia and 24 (34%) had anisometropic myopia. Forty-three patients had

bilateral amblyopia and 40 had unilateral amblyopia, with 26 (65%) of these undergoing occlusion treatment. Of these, 14 had strabismus and refractive error, 7 refractive error only, 2 strabismus only and 3 neither refractive error nor strabismus. We conclude that there is a higher incidence of strabismus and refractive error in patients with BPES than in the normal population.====And it looks like there's plenty more where that came from, folks.Rob

[Guest guest]

welcome

blepharophimosis New Member

What a good site. Lots of Information. Thanks for letting me know about it Shireen. Will have a proper look this evening and hopeful make some new contacts.

[Guest guest]

Its nice to meet you Shari. Im glad that your getting good

treatment and thet your responding so well. It makes me happy to

hear that you like your doctor, I think thats important for peace of

mind if nothing else. I hope you have a nice trip in June, please

keep us informed.

hang tough, ttfn,

>

> Hi to everyone in this group. I was diagnosed in Feb 03 with a

wbc

> of 321,000. I was having very bad night sweats, was very tired,

and

> I just hurt all over. I told the Dr. that it felt like it was my

> bones aching and not my muscles. I also had shortness of breath

and

> rashes off and on. Also at that time my eyesight also started to

> bother me. I am 45 years old I have to daughters age 20 and 23 I

> have been married to a wonderful man for almost 27 years. I

started

> going to MDA cancer center in January and will go back every 6

months

> for special tests that the Dr. here in Kansas refused to do.

Which

> was the quantative pcr. I see Dr. Faderl in Houston he was very

nice

> and answered all of my questions, and I never once felt rushed. I

go

> back June 8 and we are going to make a trip out of it. We will go

> through San on our way back. Was there in 1992 but it

will

> be different going without a 9 and 6 year old. That is my story

and

> I am grateful to have these support groups to ask questions and

learn

> more about cml.

>

> Shari from Kansas

> dx feb 03

> gleevec feb 18 03

> ccr june 12 03

> pcr jan 05 0.09

[Guest guest]

Welcome, a! My son, Micah, also had his first

surgery at age 3. Glad you are here.

April Eisele, Colorado, USA

--- mepas24 <mepas@...> wrote:

> Hi everyone my name is a l live in Australia

> and have a little

> boy charlie nearly 3 years old with bleph. I cant

> tell you how much I

> appreciate all the information and support you offer

> one another.

> After reading messages and seeing some of the photos

> I finally got up

> the courage to write and say hi. I think you guys

> are fantastic to

> share so much personal information with one another

> and feel

> privledged to be a part of this group. The photos in

> particular are

> great and a big help to my family in thinking we are

> not alone with

> this condition never having met another soul with

> bleph. Charlie has

> his first operation in November this year and we are

> a little

> nervous.Once again thanks for all the info and I

> will try not to be so

> shy in the future regards a

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hello a,

I know its a bit daunting isnt it! eveyone is excellent though - and really understands. I have BPES and so does my daughter (9), we live in the UK. Where in Australia are you from and do you have BPES or is it just your son?

My sister, her husband and two daughters have moved to Australia (3 years ago) I miss her madly but she tells me it was the best move for her. We are hoping to visit her in 2006, after we have saved up.

Excellent - Im really glad you got up the courage to say hi, there is a lot we can all learn from each other, especially when BPES is new to the family.

Regards

Clare Teale

mepas24 <mepas@...> wrote:

Hi everyone my name is a l live in Australia and have a little boy charlie nearly 3 years old with bleph. I cant tell you how much I appreciate all the information and support you offer one another. After reading messages and seeing some of the photos I finally got up the courage to write and say hi. I think you guys are fantastic to share so much personal information with one another and feel privledged to be a part of this group. The photos in particular are great and a big help to my family in thinking we are not alone with this condition never having met another soul with bleph. Charlie has his first operation in November this year and we are a little nervous.Once again thanks for all the info and I will try not to be so shy in the future regards a__________________________________________________

[Guest guest]

a,

Welcome aboard.

Where in Oz are you? I'm in Sydney, in Pennant Hills. There are a few

other Oz folks around with BPES, but I haven't seen them on this forum

for years. There are BPES-enhanced folks in Parkes, Northmead, Canberra,

Brisbane and other unknown Oz locations, but as you say we're rare

enough to not bump into each other by accident.

What surgery is Charlie having in November?

Rob

mepas24 wrote:

> Hi everyone my name is a l live in Australia and have a little

> boy charlie nearly 3 years old with bleph. I cant tell you how much I

> appreciate all the information and support you offer one another.

> After reading messages and seeing some of the photos I finally got up

> the courage to write and say hi. I think you guys are fantastic to

> share so much personal information with one another and feel

> privledged to be a part of this group. The photos in particular are

> great and a big help to my family in thinking we are not alone with

> this condition never having met another soul with bleph. Charlie has

> his first operation in November this year and we are a little

> nervous.Once again thanks for all the info and I will try not to be so

> shy in the future regards a

[Guest guest]

G'day folks,

Welcome aboard.

Nice to know I'm not alone here in Syd-er-ney. If we're not careful

we'll have a quorum for a get-together.

> Antonia apparently has a mild case as she is able to open her eyes

> enough to develop mentally - though still everyone asks me is her

> father asian - so they dont want to do the first surgery until she

> is 3 or 4, which will correct the telecanthus and then wait a year

> and do the surgery to fix the ptosis. I am not sure what sling

> surgery is though I assume it is the same thing just different

> terminology.

Yes, a (fascia lata) sling is the surgery to correct ptosis.

> Through the Childrens Hospital in Sydney, we are getting dna tested

> through a lab in Belgium to find out why this gene mutated, the

> likelyhood of it happening again and if Antonia is type 1 or II.

I assume that's the Westmead kids hostible (RAHC), not the other

(Randwick?) children's hostible?

Rob

[Guest guest]

Hi

Welcome to the group. I am sorry to hear that you aren't getting much help.

There are a few members of this group who live in Canada. I am sure that

they will be able to guide to get some good advice on access to specialists.

I live in London, England, so I can't really help on that side.

If you don't get a response straight away, it is because people sometimes

check the site every 3 or 4 days.

What is the name of your little girl, and your name? Where in Canada do you

live?

Take care

Shireen

> blepharophimosis new member

>

> hi my daughter has bleph. we found out when she was less a

> year. she is now 4yrs old. I don't know what type she has the

> gentics wouldn'tell me but she going to school next year i

> wounld like to know how to get the opertion for her eyes by

> the way we live in canada up north no specialises up here

>

>

>

>

>

[Guest guest]

Hello New Member,

Which province do you live in? I live in Northern Ontario and my son and I both have BPES. If I can be of any assistance please let me know.

momdaughtershadow <momdaughtershadow@...> wrote:

hi my daughter has bleph. we found out when she was less a year. she is now 4yrs old. I don't know what type she has the gentics wouldn'tell me but she going to school next year i wounld like to know how to get the opertion for her eyes by the way we live in canada up north no specialises up here__________________________________________________

[Guest guest]

hello anna,

you must have me crossed with someone else, as i live in the san francisco bay area, in the united states. thanks for offering your assistance:-)

mattKati Graw <katigraw@...> wrote:

Hello New Member,

Which province do you live in? I live in Northern Ontario and my son and I both have BPES. If I can be of any assistance please let me know.

momdaughtershadow <momdaughtershadow@...> wrote:

hi my daughter has bleph. we found out when she was less a year. she is now 4yrs old. I don't know what type she has the gentics wouldn'tell me but she going to school next year i wounld like to know how to get the opertion for her eyes by the way we live in canada up north no specialises up here

__________________________________________________

[Guest guest]

Hi - Looks like we have a small confusion here. 's reply was to the email posted by "momdaughtershadow <momdaughtershadow@...> "

Have a look at the end of this post. As you can see, she does live in Canada.

I guess it can get confusing if more than one person starts off a post with "New Member" as the subject heading. Took me a while to figure out what had happened.

Bye for now, Shireen

(who lives in London, England, and dearly wishes it would not rain so much this side of the pond)

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of j jSent: 06 August 2005 21:31blepharophimosis Subject: Re: blepharophimosis new member

hello anna,

you must have me crossed with someone else, as i live in the san francisco bay area, in the united states. thanks for offering your assistance:-)

mattKati Graw <katigraw@...> wrote:

Hello New Member,

Which province do you live in? I live in Northern Ontario and my son and I both have BPES. If I can be of any assistance please let me know.

momdaughtershadow <momdaughtershadow@...> wrote:

hi my daughter has bleph. we found out when she was less a year. she is now 4yrs old. I don't know what type she has the gentics wouldn'tell me but she going to school next year i wounld like to know how to get the opertion for her eyes by the way we live in canada up north no specialises up here

__________________________________________________

[Guest guest]

Hi,Tera

My daugther was born with it as well she the only one in =our family (generation) ,Its very nice to know you and welcome..her pics are under(TAILYNN)

[Guest guest]

Tera Welcome to the group, My name is Carla and my husband has BPES and my daughter nna has it as well. I also have a some who does not have it. I was really excited when I found this group. The people are really nice.

Welcome

Carlatamelnick2000 <raymondmelnick@...> wrote:

Hello everyone,My name is Tera, and I just found your group today, after being curious about what information would be on the internet concerning my syndrome. I am very surprised to find so many people in the world with my condition! I thought I was one of five or ten! It is bittersweet to read through the messages here, and to look through all the photos.I am 35 years old, and I had my first surgery at 5 months. I then had further surgery at 3, 4, and 12 years. My last minor surgery was at age 18. I really can't complain, because I haven't had any complications since my last major operation at age 12. Everything has stayed in place for 23 years!When I was born, no one had any idea what was wrong with me. They thought, perhaps, that I had a mental impairment because I didn't

open my eyes. Finally, my poor mother listened to the good advice of a neighbor, and took me to a specialist at Children's Hospital in Pittsburgh, which is affiliated with a university hospital. He knew exactly what my condition was. I had an excellent plastic surgeon, who specialized in eye disorders. I think that it is so important to search for the most specialized surgeon available.I would say that my condition most affected me as a teenager, with concerns of whether or not boys would think I was pretty. I suppose one boy did, because I am married now. We have a five year old daughter, who does not have my syndrome. Right now, we are beginning a new year of homeschooling, which is very exciting.I am looking forward to chatting with you all! Tera

Start your day with - make it your home page

[Guest guest]

Hi Tera,

Welcome to the group. Where do you live now? I have

a son, Micah, who is three years old and has bleph.

You can see pictures under " Eisele Family " . This group

is wonderful!

April Eisele, Colorado, USA

>

> tamelnick2000 <raymondmelnick@...> wrote:

> Hello everyone,

>

> My name is Tera, and I just found your group today,

> after being

> curious about what information would be on the

> internet concerning my

> syndrome. I am very surprised to find so many

> people in the world

> with my condition! I thought I was one of five or

> ten! It is

> bittersweet to read through the messages here, and

> to look through

> all the photos.

>

> I am 35 years old, and I had my first surgery at 5

> months. I then had

> further surgery at 3, 4, and 12 years. My last

> minor surgery was at

> age 18. I really can't complain, because I haven't

> had any

> complications since my last major operation at age

> 12. Everything

> has stayed in place for 23 years!

>

> When I was born, no one had any idea what was wrong

> with me. They

> thought, perhaps, that I had a mental impairment

> because I didn't

> open my eyes. Finally, my poor mother listened to

> the good advice of

> a neighbor, and took me to a specialist at

> Children's Hospital in

> Pittsburgh, which is affiliated with a university

> hospital. He knew

> exactly what my condition was. I had an excellent

> plastic surgeon,

> who specialized in eye disorders. I think that it is

> so important to

> search for the most specialized surgeon available.

>

> I would say that my condition most affected me as a

> teenager, with

> concerns of whether or not boys would think I was

> pretty. I suppose

> one boy did, because I am married now. We have a

> five year old

> daughter, who does not have my syndrome. Right now,

> we are beginning

> a new year of homeschooling, which is very exciting.

>

> I am looking forward to chatting with you all! Tera

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Tera,

I would tell you just thank you to provide us some good feedback and

to tranfert us your love for your life !!!

Francesco

> Hello everyone,

>

> My name is Tera, and I just found your group today, after being

> curious about what information would be on the internet concerning

my

> syndrome. I am very surprised to find so many people in the world

> with my condition! I thought I was one of five or ten! It is

> bittersweet to read through the messages here, and to look through

> all the photos.

>

> I am 35 years old, and I had my first surgery at 5 months. I then

had

> further surgery at 3, 4, and 12 years. My last minor surgery was

at

> age 18. I really can't complain, because I haven't had any

> complications since my last major operation at age 12. Everything

> has stayed in place for 23 years!

>

> When I was born, no one had any idea what was wrong with me. They

> thought, perhaps, that I had a mental impairment because I didn't

> open my eyes. Finally, my poor mother listened to the good advice

of

> a neighbor, and took me to a specialist at Children's Hospital in

> Pittsburgh, which is affiliated with a university hospital. He

knew

> exactly what my condition was. I had an excellent plastic

surgeon,

> who specialized in eye disorders. I think that it is so important

to

> search for the most specialized surgeon available.

>

> I would say that my condition most affected me as a teenager, with

> concerns of whether or not boys would think I was pretty. I

suppose

> one boy did, because I am married now. We have a five year old

> daughter, who does not have my syndrome. Right now, we are

beginning

> a new year of homeschooling, which is very exciting.

>

> I am looking forward to chatting with you all! Tera

[Guest guest]

Hello April,

I live about 30 minutes north of Pittsburgh, Pa, though I moved

around frequently as a child. I have a sister in Longmont, Co. Is

that close to you?

I think Micah's surgery was excellent! What a beautiful job. He

looks like a really sweet boy!

Tera

> > Hello everyone,

> >

> > My name is Tera, and I just found your group today,

> > after being

> > curious about what information would be on the

> > internet concerning my

> > syndrome. I am very surprised to find so many

> > people in the world

> > with my condition! I thought I was one of five or

> > ten! It is

> > bittersweet to read through the messages here, and

> > to look through

> > all the photos.

> >

> > I am 35 years old, and I had my first surgery at 5

> > months. I then had

> > further surgery at 3, 4, and 12 years. My last

> > minor surgery was at

> > age 18. I really can't complain, because I haven't

> > had any

> > complications since my last major operation at age

> > 12. Everything

> > has stayed in place for 23 years!

> >

> > When I was born, no one had any idea what was wrong

> > with me. They

> > thought, perhaps, that I had a mental impairment

> > because I didn't

> > open my eyes. Finally, my poor mother listened to

> > the good advice of

> > a neighbor, and took me to a specialist at

> > Children's Hospital in

> > Pittsburgh, which is affiliated with a university

> > hospital. He knew

> > exactly what my condition was. I had an excellent

> > plastic surgeon,

> > who specialized in eye disorders. I think that it is

> > so important to

> > search for the most specialized surgeon available.

> >

> > I would say that my condition most affected me as a

> > teenager, with

> > concerns of whether or not boys would think I was

> > pretty. I suppose

> > one boy did, because I am married now. We have a

> > five year old

> > daughter, who does not have my syndrome. Right now,

> > we are beginning

> > a new year of homeschooling, which is very exciting.

> >

> > I am looking forward to chatting with you all! Tera

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Tera

I am reading this message and you and I are the same age and were

both born in Pittsburgh. Difference for me, my dad and grandpa have

BPES.

I have a 1 yr old daughter with BPES.

BEth

> Hello everyone,

>

> My name is Tera, and I just found your group today, after being

> curious about what information would be on the internet concerning

my

> syndrome. I am very surprised to find so many people in the world

> with my condition! I thought I was one of five or ten! It is

> bittersweet to read through the messages here, and to look through

> all the photos.

>

> I am 35 years old, and I had my first surgery at 5 months. I then

had

> further surgery at 3, 4, and 12 years. My last minor surgery was

at

> age 18. I really can't complain, because I haven't had any

> complications since my last major operation at age 12. Everything

> has stayed in place for 23 years!

>

> When I was born, no one had any idea what was wrong with me. They

> thought, perhaps, that I had a mental impairment because I didn't

> open my eyes. Finally, my poor mother listened to the good advice

of

> a neighbor, and took me to a specialist at Children's Hospital in

> Pittsburgh, which is affiliated with a university hospital. He

knew

> exactly what my condition was. I had an excellent plastic

surgeon,

> who specialized in eye disorders. I think that it is so important

to

> search for the most specialized surgeon available.

>

> I would say that my condition most affected me as a teenager, with

> concerns of whether or not boys would think I was pretty. I

suppose

> one boy did, because I am married now. We have a five year old

> daughter, who does not have my syndrome. Right now, we are

beginning

> a new year of homeschooling, which is very exciting.

>

> I am looking forward to chatting with you all! Tera

[Guest guest]

Hi Tera,

Longmont is not far from us at all. Maybe 45 minutes.

If you are ever here let us know.

April

--- tamelnick2000 <raymondmelnick@...> wrote:

> Hello April,

> I live about 30 minutes north of Pittsburgh, Pa,

> though I moved

> around frequently as a child. I have a sister in

> Longmont, Co. Is

> that close to you?

> I think Micah's surgery was excellent! What a

> beautiful job. He

> looks like a really sweet boy!

> Tera

>

>

>

>

>

>

>

> > > Hello everyone,

> > >

> > > My name is Tera, and I just found your group

> today,

> > > after being

> > > curious about what information would be on the

> > > internet concerning my

> > > syndrome. I am very surprised to find so many

> > > people in the world

> > > with my condition! I thought I was one of five

> or

> > > ten! It is

> > > bittersweet to read through the messages here,

> and

> > > to look through

> > > all the photos.

> > >

> > > I am 35 years old, and I had my first surgery at

> 5

> > > months. I then had

> > > further surgery at 3, 4, and 12 years. My last

> > > minor surgery was at

> > > age 18. I really can't complain, because I

> haven't

> > > had any

> > > complications since my last major operation at

> age

> > > 12. Everything

> > > has stayed in place for 23 years!

> > >

> > > When I was born, no one had any idea what was

> wrong

> > > with me. They

> > > thought, perhaps, that I had a mental impairment

> > > because I didn't

> > > open my eyes. Finally, my poor mother listened

> to

> > > the good advice of

> > > a neighbor, and took me to a specialist at

> > > Children's Hospital in

> > > Pittsburgh, which is affiliated with a

> university

> > > hospital. He knew

> > > exactly what my condition was. I had an

> excellent

> > > plastic surgeon,

> > > who specialized in eye disorders. I think that

> it is

> > > so important to

> > > search for the most specialized surgeon

> available.

> > >

> > > I would say that my condition most affected me

> as a

> > > teenager, with

> > > concerns of whether or not boys would think I

> was

> > > pretty. I suppose

> > > one boy did, because I am married now. We have

> a

> > > five year old

> > > daughter, who does not have my syndrome. Right

> now,

> > > we are beginning

> > > a new year of homeschooling, which is very

> exciting.

> > >

> > > I am looking forward to chatting with you all!

> Tera

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi there Tera, my name is Tonikka, We have an almost 8 year old son

who is the 1st in our family to have BPEI.... his name is Lynden

under lynden's photos are his pictures... welcome to the group, we

live in edmonton alberta canada and there are a few of us all over

canada.... anyway again welcome

tonikka, chris lynden and hunter

> Hello everyone,

>

> My name is Tera, and I just found your group today, after being

> curious about what information would be on the internet concerning

my

> syndrome. I am very surprised to find so many people in the world

> with my condition! I thought I was one of five or ten! It is

> bittersweet to read through the messages here, and to look through

> all the photos.

>

> I am 35 years old, and I had my first surgery at 5 months. I then

had

> further surgery at 3, 4, and 12 years. My last minor surgery was

at

> age 18. I really can't complain, because I haven't had any

> complications since my last major operation at age 12. Everything

> has stayed in place for 23 years!

>

> When I was born, no one had any idea what was wrong with me. They

> thought, perhaps, that I had a mental impairment because I didn't

> open my eyes. Finally, my poor mother listened to the good advice

of

> a neighbor, and took me to a specialist at Children's Hospital in

> Pittsburgh, which is affiliated with a university hospital. He

knew

> exactly what my condition was. I had an excellent plastic

surgeon,

> who specialized in eye disorders. I think that it is so important

to

> search for the most specialized surgeon available.

>

> I would say that my condition most affected me as a teenager, with

> concerns of whether or not boys would think I was pretty. I

suppose

> one boy did, because I am married now. We have a five year old

> daughter, who does not have my syndrome. Right now, we are

beginning

> a new year of homeschooling, which is very exciting.

>

> I am looking forward to chatting with you all! Tera

[Guest guest]

Welcome to the group. You will find lots of support

here.

April

--- nicola_horsley <nicola_horsley@...> wrote:

> My daughter Grace, who is 8 months old, has been

> diagnosed with

> blepharophimosis. It came as a total surprise as no

> one else in the

> family has the condition. We have seen a wonderful

> doctor at our local

> hospital who is keen to do her best for us. We are

> still waiting for

> an appointment to see the genetics team but are

> seeing the eye

> specailist every 3 months. Grace is a very happy

> baby and is a delight

> to us all. She is however slightly behind in her

> development (she is

> not yet sitting up although she does have the

> strength to hold her

> self up.) It is very encouraging to read of people

> in similar

> situations and to see the children as they grow

> older. The pictures of

> children before and after surgery are also

> interesting. We are going

> to see the eye specialist again tommorrow and I am

> hoping to find out

> more about surgery and aiding Grace's development

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Hi Grace,Welcome

I know just what you are going though,as do everybody @ this group is brilliant.

My Name is and has BPES and is the first in the family she is two and full of it,although a little behind what she lacks in devolpment she makes up for in personality,we live in Dover Kent.

Where do you live and whom are you seeing Dr wise?

Good luck today and let us know how you got on.

nicola_horsley <nicola_horsley@...> wrote:

My daughter Grace, who is 8 months old, has been diagnosed with blepharophimosis. It came as a total surprise as no one else in the family has the condition. We have seen a wonderful doctor at our local hospital who is keen to do her best for us. We are still waiting for an appointment to see the genetics team but are seeing the eye specailist every 3 months. Grace is a very happy baby and is a delight to us all. She is however slightly behind in her development (she is not yet sitting up although she does have the strength to hold her self up.) It is very encouraging to read of people in similar situations and to see the children as they grow older. The pictures of children before and after surgery are also interesting. We are going to see the eye specialist again tommorrow and I am hoping to find out more about surgery and aiding

Grace's development

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