Re: celine 19yr old english girl with condition!

[Guest guest]

hi celine i would love to speak to you by email or phone ok scott

[Guest guest]

Hi celine,

Welcome to the group:) It must be very interesting to look at the pics of everyone with the same condition as you!

My husband and I have a beautiful wee boy named Ethan, he is 2 years old and was born with bleph, also, first in the family with it, so a big surprise for us:) A good one though, he is such a special wee man, full of smiles that light up a room, fun loving, and beautifully natured:) There are pix of him under Ethan, wearing the pumpkin suit:) there is another Ethan, also from here in NZ but he is 5 years old:)

Do you have any pix you can share with us? Would love to see if you do, always nice to see new faces:)

Ethan has had no surgery as yet, not until he is about 4 years old. He walks around with is head straight forward, doesn't tilt his head back to see, and his vision is not affected so thats good:)

talk again soon....

Leanne and family NZ

-- blepharophimosis celine 19yr old english girl with condition!

Hi guys! my name is Celine. I'm a 19yr old student from Kent, near

London in England, now studying at Warwick. I have blepharophimosis. I

had two operations, when i was 5 and 6. I am now fine, and am proud of

the uniqueness of my eyes, which people say give me a "certain

allure"! I am the first in my family to have the condition: just a

blip in the genes i'm told! This is all very new for me! I don't know

anybody else with the condition. I didn't even know this group

existed! Anyway, i just thought i would say hello. If anybody has any

questions for me, about being a young adult with the condition, about

surgery or anything, that will be fine. Are there any other people my

age in this group, m/f? It would definitely be interesting to have a

chat!

Love celine.

[Guest guest]

hi scott! where are you from? how old? do you have the condition? or

someone you know?

[Guest guest]

Hi Leanne. Thank you for your reply! I looked at the photos. He is

lovely! I haven't got any photos up yet, i will try to post a couple.

Indeed, it was very interesting to see photos of everybody! Really

nice too. It's incredible really to be in touch with families going

through the same thing that my family went through. Especially when

they are over the other side of the world - wow! Well, i hope

everthing goes ok for Ethan and your family in the future. Much love,

Celine xxx

[Guest guest]

Hi Celine,

Im Clare from Hertfordshire in the UK. I am 36 and have a daughter of 9 and we both have BPES.

Where do you come from in England?

Clarecelineybeany180 <celine180@...> wrote:

Hi Leanne. Thank you for your reply! I looked at the photos. He is lovely! I haven't got any photos up yet, i will try to post a couple. Indeed, it was very interesting to see photos of everybody! Really nice too. It's incredible really to be in touch with families going through the same thing that my family went through. Especially when they are over the other side of the world - wow! Well, i hope everthing goes ok for Ethan and your family in the future. Much love, Celine xxx

[Guest guest]

Hi Clare! I'm from Kent. I'm now studying in Leamington Spa, Warwick.

I think its so cool when i hear from families that have bpes - like

you and your daughter. Have you any other children? The 50:50 chance

of my children having the condition doesn't worry me...i guess you

just deal with it if it happens. Is that what you thought? Were you

the first in your family to have it? Sorry for so many questions!! Its

just all really interesting! Love Celine

[Guest guest]

Hi Celine:)

Thanks for the lovely reply:) Looking forward to seeing some pix of you...let us know when you have posted them, or if you want to you can send straight to my e-mail if its easier than downloading them to the site?

tltne@...

Take care and talk soon:)

Leanne and family:)

-- blepharophimosis Re: celine 19yr old english girl with condition!

Hi Leanne. Thank you for your reply! I looked at the photos. He is

lovely! I haven't got any photos up yet, i will try to post a couple.

Indeed, it was very interesting to see photos of everybody! Really

nice too. It's incredible really to be in touch with families going

through the same thing that my family went through. Especially when

they are over the other side of the world - wow! Well, i hope

everthing goes ok for Ethan and your family in the future. Much love,

Celine xxx

[Guest guest]

Hi leanne. Ok, i'll try and send you some. That will be nice : )

Take care. Love celine xxx

> Hi Celine:)

>

> Thanks for the lovely reply:) Looking forward to seeing some pix

of you..

> let us know when you have posted them, or if you want to you can

send

> straight to my e-mail if its easier than downloading them to the

site?

>

> tltne@x...

>

> Take care and talk soon:)

>

> Leanne and family:)

>

> -- blepharophimosis Re: celine 19yr old english girl with

condition!

>

> Hi Leanne. Thank you for your reply! I looked at the photos. He is

> lovely! I haven't got any photos up yet, i will try to post a

couple.

> Indeed, it was very interesting to see photos of everybody! Really

> nice too. It's incredible really to be in touch with families going

> through the same thing that my family went through. Especially when

> they are over the other side of the world - wow! Well, i hope

> everthing goes ok for Ethan and your family in the future. Much

love,

> Celine xxx

>

>

>

>

>

>

[Guest guest]

Thanks for that....talk soon....Leanne:)

-- blepharophimosis Re: celine 19yr old english girl with

condition!

>

> Hi Leanne. Thank you for your reply! I looked at the photos. He is

> lovely! I haven't got any photos up yet, i will try to post a

couple.

> Indeed, it was very interesting to see photos of everybody! Really

> nice too. It's incredible really to be in touch with families going

> through the same thing that my family went through. Especially when

> they are over the other side of the world - wow! Well, i hope

> everthing goes ok for Ethan and your family in the future. Much

love,

> Celine xxx

>

>

>

>

>

>

[Guest guest]

Hi Celine

I agree to hear about other people in the same situation is really interesting.

I have a son and a daughter, 50/50 chance, my son (7) doesnt have BPES and my daughter (9) does, thats the 50/50!

I didint really think about BPES when I had my daughter, it just wasnt in the equation, I have lived happily with it for 37 years and apart from a few probs at school and a few issues with some really silly people, I havent had any form of a problem. Its never stopped me doing anything and I spose it was the same with the children.

I was the first person in my family to be born with BPES, the doctors told my mum I was blind - she refused to believe them and found (goodness knows how) a specialist who diagnosed BPES) I was then referred to Mr Collin in Moorfields, who did my ops and my daughters ops too. (12 years later)

Kent is near us, and I have family is Leamington Spa. How about you are you the first person to have BPES, brothers sisters? Have you had any operations?

I find it interesting too.

Love clare

celineybeany180 <celine180@...> wrote:

Hi Clare! I'm from Kent. I'm now studying in Leamington Spa, Warwick. I think its so cool when i hear from families that have bpes - like you and your daughter. Have you any other children? The 50:50 chance of my children having the condition doesn't worry me...i guess you just deal with it if it happens. Is that what you thought? Were you the first in your family to have it? Sorry for so many questions!! Its just all really interesting! Love Celine

[Guest guest]

ah wow. that is so interesting!

i am also the first to be diagnosed with bpes too. luckily, the

doctors knew what it was straight away, and i was referred to dr.

joans (moorfields) when i was under a week old! from there, i saw mr

collins too. however, because the waiting list was so long, and my

father is french,(english mother) we went over to france under the

recommendation of dr. collins, and i was operated on there, when i

was 5 and 6 by dr. morax, who is very good friends with mr collins.

i have a younger brother, who is 17, and hasn't got the

condition....but the biggest blue eyes you've ever seen! anyway,

likewsie, it has never been an issue with me at all. most people

just assume that i am slightly oriental ie chinese grandmother! i

think its cool.

i am studying at warwick, and actually live in Leamington Spa -

which is a real coincidence isn't it!! i live in a student house in

south leamington.

really nice to speak to you. did your daughters operations all go

ok? dr collins is a fantastic doctor isnt he. xxx

> Hi Clare! I'm from Kent. I'm now studying in Leamington Spa,

Warwick.

> I think its so cool when i hear from families that have bpes -

like

> you and your daughter. Have you any other children? The 50:50

chance

> of my children having the condition doesn't worry me...i guess you

> just deal with it if it happens. Is that what you thought? Were

you

> the first in your family to have it? Sorry for so many questions!!

Its

> just all really interesting! Love Celine

>

>

>

>

>

>

[Guest guest]

Celine-

Hi! I'm , 21 yrs old w/ blephs. This group must be as big of a

shock to you as it was for me. I still don't know what to think

sometimes when I look at the pictures and most of the kids look more

like me than many of my relatives. It's always a shock but more of a

comfort. IM me if you have AIM- Stayceleahi or email at

stayce0317@... if you would like to chat:) Talk to ya soon!

-

[Guest guest]

Hi stacey! yeah i know what you mean!! so nice to speak to someone

bout my age with it!! where are you from? did you have any operations?

what do you do? me xxx

--- In blepharophimosis , " Stayce " <stayce0317@y...>

wrote:

> Celine-

> Hi! I'm , 21 yrs old w/ blephs. This group must be as big of

a

> shock to you as it was for me. I still don't know what to think

> sometimes when I look at the pictures and most of the kids look more

> like me than many of my relatives. It's always a shock but more of a

> comfort. IM me if you have AIM- Stayceleahi or email at

> stayce0317@y... if you would like to chat:) Talk to ya soon!

> -

[Guest guest]

Celine-

Hi! I'm 21 years old and am from Myrtle Beach, SC USA but i'm going

to school in Charolotte, NC USA. I have a pic on the page but as

mentioned in a couple of other messages it actually doesnt really look

too much like me b/c i was laughing really hard and my eyes were

squeezed together. I'm trying to get some more pics on there but i

don't have a scanner w/ me so i have to wait until i'm at home to scan

some more pics. I've had around 35 operations soo i kinda feel like i

know just as much about it as i ever wanted to know sometimes. how

many operations have you had? where did you get them done at? do you

have a pic? talk to ya later:)

-

[Guest guest]

Stacey-

Hello! I had two operations done when i was younger - 5 and 6. Can

barely remember them. wow - 35 - that is a lot of operations. Have you

got to have anymore?

I havent got a ny pictures on the site - not that technologically

inclined!! Your photos are fine...you look very happy!

Im at university in England. Am originally from just outside of london.

Got my exams this week. v.stressful! : )

Are you at uni then? studying what?

celine xxx

[Guest guest]

Celine-

I'm studing to be a surgical tech....how apporiate..haha my mom

still doesn't see how i will be able to do it..she gets completely ugh

feeling when she sees any medical show on surgeries esspecially

dealing w/ eyes. I have a doctor's appointment for June 21st and

hopefully i won't need anymore surgeries...lately i've noticed my

vision isn't as well as it used to be but i guess i can ask about that

when i'm there. Who in your family has bleph? My dad, uncle, half

sister, and grandfather is affected by it. How was growing up w/ it

when you were younger? For me it's a lot easier once I was out of high

school...i guess middle school was the hardest but i got through it. I

was really lucky to have such a great group of friends and family who

were always there even tho kids can be soo cruel sometimes. Hope

everything there is great..london is soo beautiful, i visited there

when i was 14 years old...quite an adventure:) Talk to you soon!

-

[Guest guest]

wow thats cool! i'm studying psychology at uni. Dont know what i want

to do yet.

well good luck with that appointment, i'm sure you'll be fine.

no one else in my family has the condition! Im the first! just some

kind of mutation of one of the genes. so thats quite strange - but

cool too!

i never had any problems growing up. its strange but i was never

bullied or anything. guess i was lucky. everyone's just treated me as

normal. for example when i met my boyfriend - he didnt think i even

had anything wrong with my eyes, but that i just had a chinese

grandmother! he was surprised when one of my friends told him i had

had operations!!

but i dont mind. i like being different.

yeah london is lovely. whereabouts are you from agin? only been to

america once....and that was to florida and orlando. will definitely

go again though....when i go travelling for a year after uni.

have you got exams this year? good luck. celine xxx

[Guest guest]

Celine-

hi, yea it's really weird but people all the time think i have

chinese in my family too. sometimes i just agree...seems easier.

When I was getting my nails done the other week the lady was

convinced that i was from the same country as she was...she was

like " you go visit home country lately..i go visit it last year..you

have surgery to look american..i no have surgery to look

american...i thought about it before " I totally didnt know what to

say but i was w/ my best friend and we just smiled..i was like no

but i want to go visit it soon...if i was w/ any other friends i

would of been soo caught of guard w/o any ideas what to say..that's

so great you didn't have any problems during school. school for me

was sometimes really hard just b/c people didn't really understand

and just because it was different they saw it as a way to pick on

me...but looking back i sometimes just laugh. i'm legally blind in

my left eye but can see a tad bit but have to have my left eye open

to focus w/ my right eye which isn't the best vision in the world so

i can't get contacts...i'm totally over it now but when i was

younger i just wanted contacts to fit in...ugh. that's part of the

reason i've had so many surgeries too. I never really talked about

it w/ my friends...it just doesn't come up in conversation. When i

was younger and had operations during the summer i'd just tell

people i was going on vacation...so lame i know. Now as i'm older i

talk to my best friend about it..and really not anyone else. She's

the best and saids she never even notices it...which at first i

thought she was just being nice but i know now she doesn't..just

like my mom and dad don't notice. I still get a few looks here and

there but things could be much worse. i remember my first " real "

boyfriend i even asked him why he didn't think anything about it...i

was soo perplexed haha! I do think a lot of everything has to do w/

growing up and i see people all the time going through things much

worst and i could be there instead of where i'm at....i don't i

guess its just how u look at the big picture.

I'm from South Carolina which is about 7 hours from orlando, FL. I'm

currently living in North Carolina which is about 4 hours from home

and all my friends there but i'm starting to meet new people and

everything is going good. Exams are in July..I'm taking some summer

classes to get through quicker...Talk to you soon!

-

[Guest guest]

wow - so interesting to hear you going through the same stuff!

i feel exactly the same.

sometimes i just agree too. much easier than explaining! people just

say - ah, your eyes are really nice and unusal, not really anything

horrible.

some people do stare like you said, but normally its only when i have

no mascara on (!)or when im really tired and my eyes are smaller!

but generally its ok.

anyway - this is just a short one today. in the middle of revision!

will be in touch soon. take care. and good luck with exams!!

xxx

[Guest guest]

Hi, Celine!

I'm glad to hear that you've done very well, and are very

comfortable in your own skin! What age did you have your surgery?

I've just discovered this group as well. I just became a member

yesterday. I'm glad to hear that there are Bleph adults here. I

literally stumbled across this site when I was doing a search

for " ptosis. " I'm 43, and I've had 3 surgeries as a child. The funny

thing is that my doctor and surgeon never used the " bleph " word to

me or my parents. I'm just wondering when this term came into being.

And did my doctor, 40 years ago, have any knowledge of this

condition? (Anyone else out there in this situation???)

Anyway, I wasn't even familiar with the " bleph " term, but I have all

4 of the main symptoms. And the photos of the children I see here...

they look like I did when I was their age. My doctor did surgery on

the epicanthus, and I have 2 slings, but that's all that was ever

done for me. I was scheduled to have lid surgery to correct the

ptosis when I was 12, but at the last moment the surgeon changed his

mind, and canceled the surgery. And then he died. And that was the

last time surgery was ever discussed for me.

Now, as an adult, I'm interested to know if any surgery is possible

at this stage. Anybody have any advice for me?

Thanks, and hugs!

Loka

>

> Hi guys! my name is Celine. I'm a 19yr old student from Kent, near

> London in England, now studying at Warwick. I have

blepharophimosis. I

> had two operations, when i was 5 and 6. I am now fine, and am

proud of

> the uniqueness of my eyes, which people say give me a " certain

> allure " ! I am the first in my family to have the condition: just a

> blip in the genes i'm told! This is all very new for me! I don't

know

> anybody else with the condition. I didn't even know this group

> existed! Anyway, i just thought i would say hello. If anybody has

any

> questions for me, about being a young adult with the condition,

about

> surgery or anything, that will be fine. Are there any other people

my

> age in this group, m/f? It would definitely be interesting to have

a

> chat!

> Love celine.

[Guest guest]

Hello Loka

Maree in NZ here. Was interested in your question about having

surgery as an adult. Have you had any more thoughts about that or

found out anymore information? Like you I had surgery as a babe &

again at 15yrs. I am 48 yrs old. My parents were only ever told

ptosis when I was born. Then when my daughter was born, when I was

28yrs, & she had the same eyes as me I decided to ask some more

questions - I had to write to the surgeon who operated on me 17yrs

before & that was the first time I had heard the term

blepharophimosis. It was only then that I knew it was inherited

although I was the first & only in my family of 7 children to have

it. Isn`t technology great now that we can have all the info we want

& contact with others in the same situation? Not so for our

parents......

I am considering having some more surgery too - I`m sure my lids

have drooped a bit over the years - will see about that in the

future.

> >

> > Hi guys! my name is Celine. I'm a 19yr old student from Kent,

near

> > London in England, now studying at Warwick. I have

> blepharophimosis. I

> > had two operations, when i was 5 and 6. I am now fine, and am

> proud of

> > the uniqueness of my eyes, which people say give me a " certain

> > allure " ! I am the first in my family to have the condition: just

a

> > blip in the genes i'm told! This is all very new for me! I don't

> know

> > anybody else with the condition. I didn't even know this group

> > existed! Anyway, i just thought i would say hello. If anybody has

> any

> > questions for me, about being a young adult with the condition,

> about

> > surgery or anything, that will be fine. Are there any other

people

> my

> > age in this group, m/f? It would definitely be interesting to

have

> a

> > chat!

> > Love celine.

>

[Guest guest]

> > >

> > > Hi guys! my name is Celine. I'm a 19yr old student from Kent,

> near

> > > London in England, now studying at Warwick. I have

> > blepharophimosis. I

> > > had two operations, when i was 5 and 6. I am now fine, and am

> > proud of

> > > the uniqueness of my eyes, which people say give me a " certain

> > > allure " ! I am the first in my family to have the condition:

just

> a

> > > blip in the genes i'm told! This is all very new for me! I

don't

> > know

> > > anybody else with the condition. I didn't even know this group

> > > existed! Anyway, i just thought i would say hello. If anybody

has

> > any

> > > questions for me, about being a young adult with the condition,

> > about

> > > surgery or anything, that will be fine. Are there any other

> people

> > my

> > > age in this group, m/f? It would definitely be interesting to

> have

> > a

> > > chat!

> > > Love celine.

> >

>

[Guest guest]

Hi Maree! Nice to meet you. (I've heard that New Zealand is a

beautiful place; hope to get to see it someday. My internet

connection got cut off just as I was mailing my previous reply to

you .)

Yes, I've seriously considered ptosis surgery since joining this

group. I've been encouraged by the " before " and " after " photos

posted, and hopefully there will be a nice " after " photo of me

sometime!

Like you, I'm the only one in my family with BPES, and I'm infertile.

When I found out about this syndrome, I called my mum and told her.

She said that my doctor only once used the word blepharophimosis, and

using it only to describe that my eyes are small. As you found out,

they really didn't understand the whole genetic aspect of it all. Had

I known, I wouldn't have wasted so much time and money on infertility

treatments. But the plus side of it all is that now my OB/GYN

physician understands about BPES. And infinitely better…my husband

and I adopted the most beautiful baby girl, who just happened to be

born on my birthday as well. How's that for a birthday present?!

There's a TV show here called " 60 Minutes, " and they did a show some

time ago about medical tourists from the USA and elsewhere going to

other countries for major surgeries, especially India and Thailand,

at a small fraction of the cost. They highlighted a hospital in

Chennai (Madras) India, and I checked it out. That hospital does all

kind of surgeries like heart bypass, knee and hip replacements, etc.

But it just so happens that there is another hospital in the same

city which is arguably the best eye hospital in Asia. It's called the

Shankar Nethralaya hospital, and they have a great website. I've been

corresponding with a surgeon there who specializes in ptosis surgery,

and based on photos that I've emailed him, he says that my ptosis can

be definitely improved.

So we're still making arrangements. No date yet, but we're working on

that!

Again, thanks for your message. And keep in touch if you'd like,

especially if you decide to take the surgery plunge!

Hugs,

Loka

> > >

> > > Hi guys! my name is Celine. I'm a 19yr old student from Kent,

> near

> > > London in England, now studying at Warwick. I have

> > blepharophimosis. I

> > > had two operations, when i was 5 and 6. I am now fine, and am

> > proud of

> > > the uniqueness of my eyes, which people say give me a " certain

> > > allure " ! I am the first in my family to have the condition:

just

> a

> > > blip in the genes i'm told! This is all very new for me! I

don't

> > know

> > > anybody else with the condition. I didn't even know this group

> > > existed! Anyway, i just thought i would say hello. If anybody

has

> > any

> > > questions for me, about being a young adult with the condition,

> > about

> > > surgery or anything, that will be fine. Are there any other

> people

> > my

> > > age in this group, m/f? It would definitely be interesting to

> have

> > a

> > > chat!

> > > Love celine.

> >

>