hi

[Guest guest]

Lolita . . . If I had gotten a mastopexy (lift) rather

than implants, my health would have been ever so much

better . . .

As it was, after years of being sick and spending

thousands of dollars to get my implants out, I ended

up getting a mastopexy anyway . . . The results?

Better than either before or with implants.

Hugs,

Rogene

[Guest guest]

There are women who have been implanted who reacted severe enough that it

did kill them. Lea knows of several personally.

Kenda

> hi i scheduled an breast implant appt 2 months from now. I had a child

> and went from a AA to a D and now its just skin. this is something i

> really want to feel bette about myself. could i die from it?

>

>

>

>

>

> Opinions expressed are NOT meant to take the place of advice given by licensed

> health care professionals. Consult your physician or licensed health care

> professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

> Find out what the facts are, and make your own decisions about how to live a

> happy life and how to work for a better world. " - Linus ing, two-time

> Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

> See our photos website! Enter " implants " for access at this link:

> http://.shutterfly.com/action/

>

>

[Guest guest]

Dearest Lolita, Congratulations on having a baby. There is no greater joy than having children and nurturing them through the years. I have three my self, and two step son's. They are a great joy to have. I am so glad my girls where older when I choose to get saline implants. There is no way I could take care of them if they were younger. I know how you feel when you said you really want this. I wanted them so bad. I was so small and very self-concious. I thought this was my answer. I got them six years ago. At the start of my 5th year I started having pain and tingling in my arms. Within months I lost contol of my muscles in my legs. I had extreme fatigue and mental confusion. For months I thought I had MS, until that was ruled out. I went to many doctors, and all my tests turned out normal. They could not tell me why I was having these strange

symptoms. One doctor told me the only doctor I needed to see was a psychiatrist. I had to quit my job, and my nursing classes. I was too weak to climb stairs or even write more than a sentence without pain. Within a few months I had lost my life as I knew it. I could not take my girls to the mall, without a wheelchair. This was a scary time for me. I did find a doctor who thought I was suffering from toxic overload and put me on a detox program and diet changes. That was my saving grace. In two months I could walk better and climb the stairs at home at least twice. The detoxing didnt cure me, it just helped. The ladies here on this support group graciously explained that my implants were causing my pain, weakness, and fatigue. I may have had the so called "safe" implants, but the shell was silicone. I still declined, my eyes started to dry out and my heart started to cause me issues. I was

getting worse. The mental confusion got so bad I was causing car accidents and traffic congestion. I got to the point where I was too scared to drive. I had my explant surgery two weeks ago, and I am already seeing improvement. I am less fatigued and have more clearity of mind. I may not have been on death's door, but I wasn't living either. My body was breaking down the shell and sending it to other areas of my body. Between the two surgeries I spent $11,000. And the last year we had spent an average of $1000.00 per month for health care due to my illness. Do you have that kind of $$$$? Do you have the $$$$ to have these things replaced every 3-4 years? I know a lady who has hers replaced every 3-4 years to try to prevent shell breakdown. She is on pair #3 and has yet to have problems. These are things you must consider. You may not die from your implants, but will you be able to take care of your

family? Please, please, please, take these two months to really think this through. This decision will effect your family, including your child. My prayers are with you, lolita <lolitahayes@...> wrote: hi i scheduled an breast implant appt 2 months from now. I had a child and went from a AA to a D and now its just skin. this is something i really want to feel bette about myself. could i die from it?

Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

[Guest guest]

Hello Lolita,

You are a very wise woman to do the research you have. I also wish

I had the resources in 1988 that we all have now. I sure would had

looked at other options.

Ever since I have known my implants were making me sick, and now

since explanted I have been so concerned for the women that desire

implants. A lady my husband works with is getting implants in 5-6

months. When he told me today she was doing this I called her. I

have only seen and talked with her a few times and was worried about

her reaction to my call. I was as gentle and careful as I could be,

but brutally honest as well, the thing is, She was kind enough to

say, can I call you to help me if I do want to know more? I said

sure I'll show you other womens experiences and help you understand

why I don't reccomend implants for anyone. This is my first con-

implant approach.

And God willing, I hope I can encourage more women to check out the

side effects involved.

The bottom line Lolita, is its up to you to make this vital

decision in your life of what you and your loved ones will be going

through. It effects eveyone in your life. I hope our support group

helps you make the right decision.

Take Care, a

[Guest guest]

HI MK! I know it's hard to keep up with all our messages! Today I think we did a little much on some pesky things, but otherwise, we are still all plugging away at supporting those going through explant. We've had a few women lately who have either just had explant or are soon to be explanted. I am so glad to hear you are feeling better! It does take time though, so we know that there are still going to be days that you struggle. But over time, you should see those days of struggling get fewer and farther between and your good days lasting for much longer periods. Did you experience any kind of exacerbation after explant? Pattymkkinzy1 <mkkinzy@...> wrote: Hi everyone! I just wanted to let everyone know that I am still

here. I am still trying to keep up with all the messages. Please know you are all in my thoughts and prayers. For anyone that is new I got implants in 2000 (saline textured under the muscle) and had them removed March 1st. I am doing MUCH better, but some days are still a struggle for me.Hugs to all, MK __________________________________________________

[Guest guest]

So Sis are you better now ? I mean have all your symptoms gone away ? And how long ago was your explant ?

[Guest guest]

Wow no detoxing and you are feeling better anyways ? And its only been 6 months ? Good for you ? You did have removed En Bloc ? Did you take Cipro and difulcan ?

[Guest guest]

Oh...was she/able to help you ? Are you on a lot of things ? If I need one a holistic doctor what are some things I need to tell her / him ?

[Guest guest]

Yes, I have periods where things seemed worse since getting my

explant. Things like fatigue, achiness, and brain fog. I felt like

a black cloud had been lifted at first. Over night things like the

nausea and some of my joint pain went away. I look at pictures that

were taken of me in the months before explant and I look so sick.

My friends and family have commented on this as well. I also got

relief from the every day pain/stiffness in my chest from my

implants. I never realized how much pain the actual implants caused

until they were gone. The things we endure for beauty. I think the

big test for me will be when the tempeture gets cold again. This

past winter was horrible for me. This has been and is a journey. I

am still dealing with my insurance company and haven't seen a dime

yet.

Hugs!!

> Hi everyone! I just wanted to let everyone know that I am still

> here. I am still trying to keep up with all the messages. Please

> know you are all in my thoughts and prayers. For anyone that is

new I

> got implants in 2000 (saline textured under the muscle) and had

them

> removed March 1st. I am doing MUCH better, but some days are

still a

> struggle for me.

> Hugs to all, MK

>

>

>

>

>

> Opinions expressed are NOT meant to take the place of advice given

by licensed health care professionals. Consult your physician or

licensed health care professional before commencing any medical

treatment.

>

> " Do not let either the medical authorities or the politicians

mislead you. Find out what the facts are, and make your own

decisions about how to live a happy life and how to work for a

better world. " - Linus ing, two-time Nobel Prize Winner (1954,

Chemistry; 1963, Peace)

>

> See our photos website! Enter " implants " for access at this link:

> http://.shutterfly.com/action/

>

>

[Guest guest]

Yeah, the winter was bad for me, too, all my joints swelled up

really bad, and it was so scary. Since it's warmed up the joints

are feeling better, but I've still got one fat thumb. Seems like

the bone pain still comes and goes, though. Those who knew I had

implants told me that I looked much better when they saw me about 6

weeks after explant - like the color came back in my skin. I looked

gray during the six months I had implants, even though it was during

the summertime.

Sis

> > Hi everyone! I just wanted to let everyone know that I am

still

> > here. I am still trying to keep up with all the messages.

Please

> > know you are all in my thoughts and prayers. For anyone that is

> new I

> > got implants in 2000 (saline textured under the muscle) and had

> them

> > removed March 1st. I am doing MUCH better, but some days are

> still a

> > struggle for me.

> > Hugs to all, MK

> >

> >

> >

> >

> >

> > Opinions expressed are NOT meant to take the place of advice

given

> by licensed health care professionals. Consult your physician or

> licensed health care professional before commencing any medical

> treatment.

> >

> > " Do not let either the medical authorities or the politicians

> mislead you. Find out what the facts are, and make your own

> decisions about how to live a happy life and how to work for a

> better world. " - Linus ing, two-time Nobel Prize Winner (1954,

> Chemistry; 1963, Peace)

> >

> > See our photos website! Enter " implants " for access at this link:

> > http://.shutterfly.com/action/

> >

> >

[Guest guest]

Getting the implants out is not an instant cure for most. I had my

explant six months ago and the brain fog is gone, the joint swelling

has gone down but my right thumb is still fat, and it's going to take

me alot longer to get better than it did to get sick. I have no doubt

that the implants made me sick - I was fine before implants, and

within weeks I started having symptoms, and over the course of the

next six months my symptoms continued to get worse. Keep in mind that

I've done no detoxing yet, because my body is sensitive to everything

on earth and I am very cautious about what I put in it now.

>

> So Sis are you better now ? I mean have all your symptoms gone

away ? And

> how long ago was your explant ?

>

[Guest guest]

, I'm not feeling great, believe me I am still struggling from

symptoms. The brain fog has gone away but I'm still suffering from

other symptoms, and that's why I went to a holistic doctor because I

needed help with detox.

Sis

>

> Wow no detoxing and you are feeling better anyways ? And its only

been 6

> months ? Good for you ? You did have removed En Bloc ? Did you take

Cipro and

> difulcan ?

>

[Guest guest]

Hi , it's hard for me to tell if you're responding to me, but I'm

assuming you are (the history in your messages doesn't show up, so

it's probably a good idea to say who you're asking questions of).

If you go to Dr. Kolb, she will tell you what works best for you. If

you don't, I'm not sure what you would tell them. The person I went

to didn't realize implants made people sick, but she definitely

believed it after I came to see her. Her mother had saline implants

and suffered from autoimmune illness, and never put two and two

together. She recommended I get on Probiotics, she recommended

Culturelle. I told her about Garden of Life and she said she's heard

good things about it, but had never tried it herself. She wants me to

start slowly since my body is sensitive to things. She also

prescribed Nystatin for 2 months, which is an antifungal, but I think

it's got less side effects - I didn't want the Diflucan because it

messes up my hormones something terrible. She wants me to take Cod

Liver Oil because she said that helps with the joint swelling. She

also stressed that I take MethylCobalamin B-12. Apparently that type

of B-12 is more effective than others, and helps with the methylation

pathways (which I think is related to the liver). She wanted me to

inject myself 3 times a week, but said if I didn't like the idea of

that to get sublingual instead (which is a little pill that disolves

under your tongue). She said that helps the liver to start

functioning properly. Also she suggested Glutamine, Cysteine and

Alpha Lipoic Acid. She had other things on her list, like Milk

Thistle, but she wants me to focus on the Probiotic, the B vitamin and

the Cod Liver Oil first.

A few people on this site have used Dr. Leu in Oklahoma, and he does

telephone consultations. I know Cherie had alot of success with him,

as did Kenda (Kenda didn't have implants, but she had immune issues -

which reminds me, anyone heard from Kenda lately?).

Sis

>

> Oh...was she/able to help you ? Are you on a lot of things ? If I

need one a

> holistic doctor what are some things I need to tell her / him ?

>

[Guest guest]

Sis,

Me too this past winter OMG felt like I was gonna die. Joints swelling and red, muscle aches it was horrible. My color was like so bad it is already coming back slowly. Yaaaaa

Donna

[Guest guest]

I hope you do get reimbursed by your insurance company. Even if you do not, though, I am sure you would agree that getting your implants out was a great investment into your health! I am happy you have seen improvements! The things that you have experienced the exacerbations with are fairly consistent with what many other women have experienced. In time, they should dissipate in large measure. Stay positive about your healing! It will happen in time! Patty mkkinzy1 <mkkinzy@...> wrote: Yes, I have periods where things seemed worse since getting my explant. Things like fatigue, achiness, and brain fog. I felt like a black cloud had been lifted at first. Over night things like the nausea and some of my

joint pain went away. I look at pictures that were taken of me in the months before explant and I look so sick. My friends and family have commented on this as well. I also got relief from the every day pain/stiffness in my chest from my implants. I never realized how much pain the actual implants caused until they were gone. The things we endure for beauty. I think the big test for me will be when the tempeture gets cold again. This past winter was horrible for me. This has been and is a journey. I am still dealing with my insurance company and haven't seen a dime yet.Hugs!! __________________________________________________

[Guest guest]

Hi/Great! (Maree?)

You're building on a foundation of truth, (as of connecting the

facts) for understanding more, of communication, thereof. There's

much to do and enjoy in that respect.. .

The Autism Research Institute (ARI) certainly was a good place for us

to start, after reading Maurice's, Letter me hear your

voice. It's not as political as some of the other organizations are.

Problems, with that. You don't really need that, I Feel. Where you

wish to represent yourself ( " selves " ) as I Feel you should (like

it's, not so bad?!.) I would reach a " larger " audience in that

respect.

I'm thinking of helping Individuals in that respect by paying for

their message(s) to be published in the " wider " media, (to go beyond

the political) to reach a larger audience that might come to you with

the resources you might/would need, thereof. You'll need the balls

for " that, " where you do need the resources for what you have to do

Write your story, of needs, up in the local " larger " paper where

servicers of services (and charities) might be available, for the

help you need, and help, I suspect, " will " beat a path to your door,

I suspect, for the small investment that would be? You can't/

shouldn't hide in a closet (of your own world) and expect to be,

helped? .. . (What do you think we're trying to help you with?!.)

On the basis of what I'm talking about and am about... be sure, of

reaching a wider and potentially more useful audience, thereof

It's what you probably have to do, (to get things moving along

quicker than we did, that you should do where time " is " of the

essence) includes representing yourself and communicating yourself

for all you can be and get, thereof.

It's nice to have you on board! I'm sure others will come forward

with more specific options for what you can do in a less open

framework, which is OK, too, for what step works for you, of All,

thereof.. .

Mike,

I ABA

ABA for Undertanding More

I can give you the money to do that, if you really need it and no one

will privide it to you, to get published in a major daily? Just say

what you need and give me the word/s, thereof, for " all " of you, of

your " family, " thereof. And please think of yourselves more as

Individuals (of a family) who deserve special-services in that

respect, of " whatever " condition, including autism, that might be

present? Don't forget to see your " doctor " about that, for another

opinion if not a very important opinion, thereof.

***

No, I'm " not " Oprah in that respect.. .;=)* ($$$ I'm sure others

would do the same, or better, for you, thereof? .. . Let's " more "

than hope so.. . (I do.

If you don't like the idea just pass on it, but think about it? It

should open your eyes to the possibilities, if not stimulate more,

here, whatever, thereof, but you do need help. We all do!

I believe the ARI has a flowchart on how you can proceed with things

of your situation, that " includes " all options, biomedical, ABA,

etc.. If they don't, somebody should, but if I recall (not my

expertise?) they " do, " and supported within " your " " means, " if I'm

not mistaken. Very important, that. They especially have a list of

the many wonderful books written on the subject, that you can and

probably should start with on your journey, and what a wonderful

journey it " can " be.

Government agencies can (should) help you with what they can provide,

but don't count on them to come looking for you, or understand you,

or serve you, or represent you. (!) Don't count on that and only

that, please

My kids and wife have blessed me of what can be done, and so have

these groups and many, many, other helping, giving, others,

of " Communication, " thereof, that you perhaps should accept for what

they can do for you as an Individual, " first, " thereof.

Don't sweat the labels, otherwise. They are or can be " very "

politically abusive I have found for my self.. . Deal with

the " conditions, " instead. They're not so much your fault or

who " you " really are.

God will help with that.

Best wishes, thereof.

--- In , Maree McMahon <mareemcmahon@...>

wrote:

>

> Hi

> My name is Maree McMahon. I am a mother of three children, now all

at school. My eldest is a girl and she is doing well academically and

socially, although she does experience frequent anxiety/panic

attacks. She has received counselling and is also taking a Multi

vitamin B.

> My two younger boys both have sensory issues. They particularly

have difficulties with clothes touching their skin and may become

quite distressed with some types of clothes. Seams and tags are the

worst. I am also having great difficulty finding food that they will

eat †" very fussy eaters.

> They are both having assessments at the moment but the school

principal and an occupational therapist both suspect that it may be a

form of autism. Their father is also suspected to have an undiagnosed

form of autism.

> I have joined this group because I would like to hear what others

have to say: how others cope, any advice given, feelings shared.

> Looking forward to being involved.

>

>

> Get the name you always wanted with the new y7mail email

address. www.7.com.au/y7mail

>

>

[Guest guest]

Hi Maree,

That was " Let Me Hear Your Voice, " A Family's Triumph Over Autism, by

Maurice, (a Fawcett Columbine book, 1993) that inspired us

of our start towards Lovaas, the ARI, etc..

If your kids are in any way making it in the mainstream of school, as

you suggest, you would probably want to look at educational material

better suited for more advanced learners of special-needs and/or

differences, that ABA encompasses of its " method " but less of

specific curricula developed to that.

Much if not most ABA curricula already developed applies to early,

usually pre-school learners. Maybe others here could help you with

that. The method still very much applies and I would encourage you

to look into that, especially as related to the Verbal Behavior

approach.

The myriad and varied other interventions that could and should prove

helpful are well explored at the ARI site. Keying " Autism Research

Institute " into an Internet search engine should get you connected

with that.

Best wishes,

Mike

> >

> > Hi

> > My name is Maree McMahon. I am a mother of three children, now

all

> at school. My eldest is a girl and she is doing well academically

and

> socially, although she does experience frequent anxiety/panic

> attacks. She has received counselling and is also taking a Multi

> vitamin B.

> > My two younger boys both have sensory issues. They particularly

> have difficulties with clothes touching their skin and may become

> quite distressed with some types of clothes. Seams and tags are the

> worst. I am also having great difficulty finding food that they

will

> eat †" very fussy eaters.

> > They are both having assessments at the moment but the school

> principal and an occupational therapist both suspect that it may be

a

> form of autism. Their father is also suspected to have an

undiagnosed

> form of autism.

> > I have joined this group because I would like to hear what others

> have to say: how others cope, any advice given, feelings shared.

> > Looking forward to being involved.

> >

> >

> > Get the name you always wanted with the new y7mail email

> address. www.7.com.au/y7mail

> >

> >

[Guest guest]

Hi again to everyone,

I am from Turkey and have a 9 month old son born with BPES.He is the one and

only in our family.I went to 3 specialists and the last one was great.He told me

that I should wait till my son is 4 years old and he can operate after

that.There will be 2 surgeries.First will be for the epicantus and the second

will be for eyelids.He will use facia latia(I don't know how to write this

word).

I am now much more happy and I started to enjoy this position.It may sound

interesting but I really laugh when people look at him and clasically look to my

husband,me and my older son.I know what are they seeking and I have the answer

but they really look so funny while doing this.Poyraz(my 9 month old son) is a

very happy and beautiful baby for me.I am really proud of him and don't care

negative things.I think he will have a very strong personality and sense of

humour because of this eye condition.I can not wait him to grow and live every

step with him.

I don't want to think  " I should pray god because there should be something

worse " because I know other people look at my son and thank god their child

don't have it.So I don't want to do this to other parents whose children's

conditions are worse than my son's(downs...etc.).I just accept our condition and

trying to be happy and I think I can do it.

I will put pictures of my son today night to the group.

Please try to enjoy what you have.

PINAR(from Turkey-Istanbul)

[Guest guest]

Pinar~

That was beautifully said. Thank you for the spirit! I personally needed a little reminder today...

and Payton (1 yr).

Hillsboro, Oregon USA

From: PINAR SANRI <pinarsanri@...>Subject: blepharophimosis hiblepharophimosis Date: Monday, July 13, 2009, 6:37 AM

Hi again to everyone,I am from Turkey and have a 9 month old son born with BPES.He is the one and only in our family.I went to 3 specialists and the last one was great.He told me that I should wait till my son is 4 years old and he can operate after that.There will be 2 surgeries.First will be for the epicantus and the second will be for eyelids.He will use facia latia(I don't know how to write this word).I am now much more happy and I started to enjoy this position.It may sound interesting but I really laugh when people look at him and clasically look to my husband,me and my older son.I know what are they seeking and I have the answer but they really look so funny while doing this.Poyraz( my 9 month old son) is a very happy and beautiful baby for me.I am really proud of him and don't care negative things.I think he will have a very strong personality and sense of humour because of this eye condition.I can not

wait him to grow and live every step with him.I don't want to think "I should pray god because there should be something worse" because I know other people look at my son and thank god their child don't have it.So I don't want to do this to other parents whose children's conditions are worse than my son's(downs. ..etc.).I just accept our condition and trying to be happy and I think I can do it.I will put pictures of my son today night to the group.Please try to enjoy what you have.PINAR(from Turkey-Istanbul)

[Guest guest]

merhaba pinar,

i think you just have said som really important things. thank you for that.

dolph

purmerend - the netherlands

blepharophimosis hi

Hi again to everyone,

I am from Turkey and have a 9 month old son born with BPES.He is the one and

only in our family.I went to 3 specialists and the last one was great.He

told me that I should wait till my son is 4 years old and he can operate

after that.There will be 2 surgeries.First will be for the epicantus and the

second will be for eyelids.He will use facia latia(I don't know how to write

this word).

I am now much more happy and I started to enjoy this position.It may sound

interesting but I really laugh when people look at him and clasically look

to my husband,me and my older son.I know what are they seeking and I have

the answer but they really look so funny while doing this.Poyraz(my 9 month

old son) is a very happy and beautiful baby for me.I am really proud of him

and don't care negative things.I think he will have a very strong

personality and sense of humour because of this eye condition.I can not wait

him to grow and live every step with him.

I don't want to think " I should pray god because there should be something

worse " because I know other people look at my son and thank god their child

don't have it.So I don't want to do this to other parents whose children's

conditions are worse than my son's(downs...etc.).I just accept our condition

and trying to be happy and I think I can do it.

I will put pictures of my son today night to the group.

Please try to enjoy what you have.

PINAR(from Turkey-Istanbul)

------------------------------------

[Guest guest]

Dear Dolph, Dear Pinar,I honestly share your in your perspective. What a blessing my son has been...I wouldn't trade his personality or his eyes for anything...They ARE who he is...My son Andy is five years old and was born with BPES....I have a nephew who said to me, "Auntie Debbie, I wouldn't want ANdy to have big eyes like mine...I just love how he looks!"Life is really all about your outlook! I am happy to share this with my friends on the other side of the world. Very cool...BEST TO ALL OF YOU and your children,Debbie Fehl, New Jersey, USAFrom: Dolph Heideman <ajheideman@...>Subject: Re:

blepharophimosis hiblepharophimosis Date: Monday, July 13, 2009, 3:30 PMmerhaba pinar,i think you just have said som really important things. thank you for that.dolphpurmerend - the netherlands blepharophimosis hiHi again to everyone,I am from Turkey and have a 9 month old son born with BPES.He is the one and only in our family.I went to 3 specialists and the last one was great.He told me that I should wait till my son is 4 years old and he can operate after

that.There will be 2 surgeries.First will be for the epicantus and the second will be for eyelids.He will use facia latia(I don't know how to write this word).I am now much more happy and I started to enjoy this position.It may sound interesting but I really laugh when people look at him and clasically look to my husband,me and my older son.I know what are they seeking and I have the answer but they really look so funny while doing this.Poyraz(my 9 month old son) is a very happy and beautiful baby for me.I am really proud of him and don't care negative things.I think he will have a very strong personality and sense of humour because of this eye condition.I can not wait him to grow and live every step with him.I don't want to think "I should pray god because there should be something worse" because I know other people look at my son and thank god their child don't have it.So I don't want to do

this to other parents whose children's conditions are worse than my son's(downs...etc.).I just accept our condition and trying to be happy and I think I can do it.I will put pictures of my son today night to the group.Please try to enjoy what you have.PINAR(from Turkey-Istanbul)------------------------------------

[Guest guest]

Merhaba,(Means hello)

Thank you for your kind comments.Of course I sometimes feel bad but it ends in 10 seconds because I don't let it affect our whole life.If I can feel good and comfortable about it I know my son will also be happy and don't feel that there is something wrong about him.

I uploaded pictures of us.No operations yet.

I know in the future our children will write to each other from this group because it is such a rare condition that people want to see there are many others in all over the world.

If I am strong and comfortable about it, it is because of this group.Thank you all.

Pinar

From: Debra Fehl <debrayusko@...>blepharophimosis Sent: Tuesday, July 14, 2009 2:02:05 AMSubject: Re: blepharophimosis hi

Dear Dolph, Dear Pinar,I honestly share your in your perspective. What a blessing my son has been...I wouldn't trade his personality or his eyes for anything...They ARE who he is...My son Andy is five years old and was born with BPES....I have a nephew who said to me, "Auntie Debbie, I wouldn't want ANdy to have big eyes like mine...I just love how he looks!"Life is really all about your outlook! I am happy to share this with my friends on the other side of the world. Very cool...BEST TO ALL OF YOU and your children,Debbie Fehl, New Jersey, USA

From: Dolph Heideman <ajheidemanupcmail (DOT) nl>Subject: Re: blepharophimosis hiblepharophimosisDate: Monday, July 13, 2009, 3:30 PM

merhaba pinar,i think you just have said som really important things. thank you for that.dolphpurmerend - the netherlands blepharophimosis hiHi again to everyone,I am from Turkey and have a 9 month old son born with BPES.He is the one and only in our family.I went to 3 specialists and the last one was great.He told me that I should wait till my son is 4 years old and he can operate after that.There will be 2 surgeries.First will be for the epicantus and the second will be for eyelids.He will use facia latia(I don't know how to write this word).I am now much more happy and I started to enjoy this position.It may sound interesting but I

really laugh when people look at him and clasically look to my husband,me and my older son.I know what are they seeking and I have the answer but they really look so funny while doing this.Poyraz( my 9 month old son) is a very happy and beautiful baby for me.I am really proud of him and don't care negative things.I think he will have a very strong personality and sense of humour because of this eye condition.I can not wait him to grow and live every step with him.I don't want to think "I should pray god because there should be something worse" because I know other people look at my son and thank god their child don't have it.So I don't want to do this to other parents whose children's conditions are worse than my son's(downs. ..etc.).I just accept our condition and trying to be happy and I think I can do it.I will put pictures of my son today night to the group.Please try to enjoy what you

have.PINAR(from Turkey-Istanbul)------------ --------- --------- ------