new member

[Guest guest]

Hi mara...gosh, looking at those pics, you can't even tell you have blephs at all!!! amazing...I would love to see a photo of you when you were younger before surgery, please let me know if you have one...or a few:)...we have a 7 month old son with this...only one in our family who does??? its mindboggling!...have a pic posted of him if you want to see him...hes a wee cutey, with a huge smile to light up a room, although he is starting to cry right now, I will have to go:) talk later...Leanne and family:)

blepharophimosis New Member

Hi Everyone-My name is Mara and I am a new member. I am a 25 year old female with BPES and was also recently diagnosed with Pre Mature Ovarian Failure (POF) which i am learning is linked to BPES. Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and 10. Obviously, I don't remember the surgeries at 1 and 2 but I have a very clear memory of my surgery at age 10. The last surgery was the one that was most successful. It changed the look of my eyes drastically. That was 15 years ago, so I can't even imagine the technology that there is now! As I have gotten older and my face has matured, my eyes definitely look bigger than they ever did. The doctor had told my parents that would happen but who really knew if it would. I can honestly say that I look the best I have ever looked.I have been reading all the messages posted and wish that this resource was around when I was growing up. I would have loved to be able to talk with others about what I was going through. I always had a ton of friends but it was the strangers that really got to me. "What's wrong with your eyes?" "Are you retarded or something"?; i would get these comments and other like it quite often. It really hurt but luckily I had a very supportive family and great friends who helped me through it definitely didn't stop me from anything...I was involved in all types of sports (soccer, softball, gymnastics, sking,etc) and always had a great attitude!So, that's a little history about me. I would love to chat with other e females who have pof or other problems conceiving as I am concerned that I will not be able to have kids. I also have a concern that there are other things linked to BPES that I am not aware of. Since I have grown up with BPES, i would also be happy to answer any questions anyone has.I have also posted photos of me on the board. When I go to my parents house, I can get photos of my from when I was younger to show the difference.

[Guest guest]

Hi Leanne-

Thanks, I know, it's amazing how big my eyes look now... sometimes I can hardly believe it myself! I would be more than happy to share photos of when I was younger before surgery. I currently live in Manhattan and all photos of me from when I was younger are at my parents house in NJ. However, I'm going to visit them this weekend so I will post them as soon I get them.

I looked at the photos of your son and he is such a cutie! I am the only one in my family w/ blephs and we can't seem to trace it back to any other family members either. Let me know if you have any other questions.

Hope all is well!

Maratltne <tltne@...> wrote:

Hi mara...gosh, looking at those pics, you can't even tell you have blephs at all!!! amazing...I would love to see a photo of you when you were younger before surgery, please let me know if you have one...or a few:)...we have a 7 month old son with this...only one in our family who does??? its mindboggling!...have a pic posted of him if you want to see him...hes a wee cutey, with a huge smile to light up a room, although he is starting to cry right now, I will have to go:) talk later...Leanne and family:)

blepharophimosis New Member

Hi Everyone-My name is Mara and I am a new member. I am a 25 year old female with BPES and was also recently diagnosed with Pre Mature Ovarian Failure (POF) which i am learning is linked to BPES. Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and 10. Obviously, I don't remember the surgeries at 1 and 2 but I have a very clear memory of my surgery at age 10. The last surgery was the one that was most successful. It changed the look of my eyes drastically. That was 15 years ago, so I can't even imagine the technology that there is now! As I have gotten older and my face has matured, my eyes definitely look bigger than they ever did. The doctor had told my parents that would happen but who really knew if it would. I can honestly say that I look the best I have ever looked.I have been reading all the messages posted and wish

that this resource was around when I was growing up. I would have loved to be able to talk with others about what I was going through. I always had a ton of friends but it was the strangers that really got to me. "What's wrong with your eyes?" "Are you retarded or something"?; i would get these comments and other like it quite often. It really hurt but luckily I had a very supportive family and great friends who helped me through it definitely didn't stop me from anything...I was involved in all types of sports (soccer, softball, gymnastics, sking,etc) and always had a great attitude!So, that's a little history about me. I would love to chat with other e females who have pof or other problems conceiving as I am concerned that I will not be able to have kids. I also have a concern that there are other things linked to BPES that I am not aware of. Since I have

grown up with BPES, i would also be happy to answer any questions anyone has.I have also posted photos of me on the board. When I go to my parents house, I can get photos of my from when I was younger to show the difference.

[Guest guest]

Hi -

Glad to hear from you. I'm sure your feeling a great deal of emotions right now including being nervous and scared. I hope that my experiences and advise will give you some sort of peace of mind. First off, I have to say that having such a loving and supporting family made me who I am today. They were my support system and helped me though everything. I am a very strong, confident women but it took me a while to get here!

Like I said before, I never had a problem making friends. I was a very energetic and friendly girl. I was extremely active and was constantly with playing with other kids. The problem for me occurred when I was placed in a new situation of any kind, basically when there was people I didn't know. Whenever I met someone new, the first comment was always "what's wrong with your eyes, why are they so small"?

I believe this is when I developed my strong personality. In the beginning, I cried EVERY time i heard this. It just made me feel very different, almost like an alien. I remember crying to my mom and she would always tell me how beautiful I was and it doesn't matter what other people think. Then after a while, I got used to it and just expected the questions. I would be honest, and say I was born this way. I learned not to make a big deal of it and just move on .

All girls have self esteem issues and having blephs will definitely add to it. Your daughter will need to feel beautiful on the inside and outside. Unfortunately, you will not be able to give this to her because as i'm sure you know, it's something that comes from with in. Although, what you can give her is a tremendous amount of love and support!!!I

I hope that this helps a little and please feel free to ask me anything!

Take care-

MaraRob & <bobjnr@...> wrote:

Hi Mara, I would love to hear how you dealt with all those comments...as we have a 9 Months old daughter and want to be ready to help her deal with it. She is the only one in our family to have bpes. Your imput would be much appreciated. Thanks

blepharophimosis New MemberHi Everyone-My name is Mara and I am a new member. I am a 25 year old female with BPES and was also recently diagnosed with Pre Mature Ovarian Failure (POF) which i am learning is linked to BPES. Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and 10. Obviously, I don't remember the surgeries at 1 and 2 but I have a very clear memory of my surgery at age 10. The last surgery was the one that was most successful. It changed the look of

my eyes drastically. That was 15 years ago, so I can't even imagine the technology that there is now! As I have gotten older and my face has matured, my eyes definitely look bigger than they ever did. The doctor had told my parents that would happen but who really knew if it would. I can honestly say that I look the best I have ever looked.I have been reading all the messages posted and wish that this resource was around when I was growing up. I would have loved to be able to talk with others about what I was going through. I always had a ton of friends but it was the strangers that really got to me. "What's wrong with your eyes?" "Are you retarded or something"?; i would get these comments and other like it quite often. It really hurt but luckily I had a very supportive family and great friends who helped me through it definitely didn't stop me from anything...I

was involved in all types of sports (soccer, softball, gymnastics, sking,etc) and always had a great attitude!So, that's a little history about me. I would love to chat with other e females who have pof or other problems conceiving as I am concerned that I will not be able to have kids. I also have a concern that there are other things linked to BPES that I am not aware of. Since I have grown up with BPES, i would also be happy to answer any questions anyone has.I have also posted photos of me on the board. When I go to my parents house, I can get photos of my from when I was younger to show the difference.

[Guest guest]

Sally,

Welcome to the group. That is a good question. My son Garrett is above

average in height and weight, but he also has ADHD. He think he is behind

compared to other 5 yr. olds. He didn't even know his colors until he was

put on medication for his ADHD. He still doesn't know how to spell his name

or even know the letters in his name. I've never been told that it was

related to BPES, but then again i wasn't even told exactly what he had until

July of this year. BPES runs in my family, my grandfather, father, me, my

oldest son, and my youngest son Garrett. Having dealt with what i thought

was ptosis all these years then to find out that it was more than just the

ptosis. Hopefully someone else might know about the other issues being

related to BPES.

[Guest guest]

>

>

>We are dealing with a variety of issues with my daughter and are

>wondering if any of them are related to the Bleph. She is very

>small. She just recently moved into the 5th percentile in weight.

>The geneticist predicts that she won't make 5 foot. She is also

>developmentally delayed by about a year and a half. She has also

>been diagnosed with ADHD.

>

>

My experience has been that size and development are not directly

related to blepharophimosis. For example, I'm 192cm tall (for those of

you who live in the only country in the world that still still uses the

archaic imperial measurements, that's 6' 2 " or 142 pounds or 73 acres or

97.3 degrees Fahrenheit or something like that. 240 volts, perhaps?) and

a (lapsed) member of Mensa. Other blephos I've come across have varied

in height, and have not had developmental issues. My son and I both have

mild AD(not -H-)D, but no other blepho I've come across has. Some of the

research lists developmental delay as an occasional comorbid condition,

but it's rare enough that they consider it to be unrelated. For example,

one journal article (which I referred to in a post here t'other day)

says " Intellectual development is usually normal, although mild mental

retardation has occasionally been reported " . I sometimes wonder whether

the ptosis can affect one's development (if one can't see well, one

can't learn well)? Until I had my ptosis corrected, I was among the

'lazy' in the lowest class at school and thereafter, I went to the top

of the highest class (they 'streamed ' in those days). Just a thought.

>I guess my question is can all of this stuff be linked or do I have

>a child with a variety of unrelated medical issues?

>

There are some things that seem to be common enough with bleph that one

could consider them to be part of it (apart from the obvious, such

things as high arches in one's feet or brown eyes) but also lots of

other things that happen rarely but are more than one-offs (such as my

son's congenital hiatus hernia, others' developmental delay, etc). I

once found a journal article that described all the " other " conditions

that had occurred with bleph, and their frequency of occurrence (e.g.

" Having five feet: 0.2% " ) but have carefully lost it, somehow. If I find

it again, I'll post a reference to it. The information is out there -

somewhere - we just have to find it!

I hope this has helped.

Rob

[Guest guest]

,

Thanks for telling me about Garrett. I am so glad to finally be able to ask my questions. Nat started Kindergarten this year. She has finally picked up on her colors, but the letters in her name are giving her a lot of trouble. We have been working on them and she gets frustrated. She told me the other day that "it's just too hard." That breaks my heart because I don't want her to struggle while learning.

We have opted not to medicate at this time. We are in close contact with her teacher and are gathering info to determine if medication is the way to go so that she can be successful in school.

I can't help but think that maybe in some cases this is all related. Sounds like Garrett and Nataley have a lot in common. Please keep me posted on his learning. If you find something that works to help him learn please let me know.

Have a blessed day.

Sally Feichtner <mfeichtner@...> wrote:

Sally,Welcome to the group. That is a good question. My son Garrett is aboveaverage in height and weight, but he also has ADHD. He think he is behindcompared to other 5 yr. olds. He didn't even know his colors until he wasput on medication for his ADHD. He still doesn't know how to spell his nameor even know the letters in his name. I've never been told that it wasrelated to BPES, but then again i wasn't even told exactly what he had untilJuly of this year. BPES runs in my family, my grandfather, father, me, myoldest son, and my youngest son Garrett. Having dealt with what i thoughtwas ptosis all these years then to find out that it was more than just theptosis. Hopefully someone else might know about the other issues beingrelated to BPES.

[Guest guest]

Thanks Rob...I appreciate your response...all the info I can gather makes this journey a little easier.

SallyRob <rawatson@...> wrote:

>>>We are dealing with a variety of issues with my daughter and are >wondering if any of them are related to the Bleph. She is very >small. She just recently moved into the 5th percentile in weight. >The geneticist predicts that she won't make 5 foot. She is also >developmentally delayed by about a year and a half. She has also >been diagnosed with ADHD. > >My experience has been that size and development are not directly related to blepharophimosis. For example, I'm 192cm tall (for those of you who live in the only country in the world that still still uses the archaic imperial measurements, that's 6' 2" or 142 pounds or 73 acres or 97.3 degrees Fahrenheit or something like that. 240 volts, perhaps?) and a (lapsed) member of Mensa. Other blephos I've come

across have varied in height, and have not had developmental issues. My son and I both have mild AD(not -H-)D, but no other blepho I've come across has. Some of the research lists developmental delay as an occasional comorbid condition, but it's rare enough that they consider it to be unrelated. For example, one journal article (which I referred to in a post here t'other day) says "Intellectual development is usually normal, although mild mental retardation has occasionally been reported". I sometimes wonder whether the ptosis can affect one's development (if one can't see well, one can't learn well)? Until I had my ptosis corrected, I was among the 'lazy' in the lowest class at school and thereafter, I went to the top of the highest class (they 'streamed ' in those days). Just a thought.>I guess my question is can all of this stuff be linked or do I have >a child with a variety of unrelated medical

issues?>There are some things that seem to be common enough with bleph that one could consider them to be part of it (apart from the obvious, such things as high arches in one's feet or brown eyes) but also lots of other things that happen rarely but are more than one-offs (such as my son's congenital hiatus hernia, others' developmental delay, etc). I once found a journal article that described all the "other" conditions that had occurred with bleph, and their frequency of occurrence (e.g. "Having five feet: 0.2%") but have carefully lost it, somehow. If I find it again, I'll post a reference to it. The information is out there - somewhere - we just have to find it!I hope this has helped.Rob

[Guest guest]

Hi sally...Do you have any pics of your wee daughter? would love to see them if you do:)...our son is ethan...there is a pic of him posted on the site...he is 7 months old:) a happy wee guy, who seems to be developing normal so far...well thats comparing to our 1st son tyler who is 4 years old, he doesn't have bleph, no one in our family does? don't know where it came from!....

blepharophimosis New Member

My name is Sally and my daughter, Nataley, was diagnosed at the age of 2. She has a very mild case of Blepharophimosis. We fortunately do not have to have surgery. The doctors feel that if she desires to change her appearance, she could make that decision when she is old enough. I always knew there was something a little different about the way she looked. The space between her eyes is very wide and her eyelids are droopy. I asked her pediatrician when she was an infant if I should be concerned and he told me that she just had a wide nasal base and not to worry because she was meeting all her mile stones.We eventually had to go to an ear, nose and throat doc who took one look at her and had us in a genticists office with a month. Many people wondered if she had Downs Syndrome. We eventually got a diagnosis, but unfortuately very little information about what we are dealing with.We are dealing with a variety of issues with my daughter and are wondering if any of them are related to the Bleph. She is very small. She just recently moved into the 5th percentile in weight. The geneticist predicts that she won't make 5 foot. She is also developmentally delayed by about a year and a half. She has also been diagnosed with ADHD. I guess my question is can all of this stuff be linked or do I have a child with a variety of unrelated medical issues?Thanks to anyone who can enlighten me about what I am dealing with.Sally

[Guest guest]

Hello...I did see the pics of Ethan...what a sweetheart. I will get some pics of Nat posted soon. As in Ethan's case, we don't know where this came from either...life is strange that way...tltne <tltne@...> wrote:

Hi sally...Do you have any pics of your wee daughter? would love to see them if you do:)...our son is ethan...there is a pic of him posted on the site...he is 7 months old:) a happy wee guy, who seems to be developing normal so far...well thats comparing to our 1st son tyler who is 4 years old, he doesn't have bleph, no one in our family does? don't know where it came from!....

blepharophimosis New Member

My name is Sally and my daughter, Nataley, was diagnosed at the age of 2. She has a very mild case of Blepharophimosis. We fortunately do not have to have surgery. The doctors feel that if she desires to change her appearance, she could make that decision when she is old enough. I always knew there was something a little different about the way she looked. The space between her eyes is very wide and her eyelids are droopy. I asked her pediatrician when she was an infant if I should be concerned and he told me that she just had a wide nasal base and not to worry because she was meeting all her mile stones.We eventually had to go to an ear, nose and throat doc who took one look at her and had us in a genticists office with a month. Many people wondered if she had Downs Syndrome. We eventually got a diagnosis, but unfortuately very little information about what we

are dealing with.We are dealing with a variety of issues with my daughter and are wondering if any of them are related to the Bleph. She is very small. She just recently moved into the 5th percentile in weight. The geneticist predicts that she won't make 5 foot. She is also developmentally delayed by about a year and a half. She has also been diagnosed with ADHD. I guess my question is can all of this stuff be linked or do I have a child with a variety of unrelated medical issues?Thanks to anyone who can enlighten me about what I am dealing with.Sally

[Guest guest]

Dear Mara,

hi my name is Nina and I have a one year old Girl who has bpes. We have also

seen Dr,

Katowitz and he recommends surgery yet 3 other doctors suggested waiting. 9 her

ptsosis isn't that severe) i would love to take to you about your experience.

Please e-mail

me at your earliest convenience.

Thanks

nina

> Hi Everyone-

>

> My name is Mara and I am a new member. I am a 25 year old female

> with BPES and was also recently diagnosed with Pre Mature Ovarian

> Failure (POF) which i am learning is linked to BPES.

>

> Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and 10.

> Obviously, I don't remember the surgeries at 1 and 2 but I have a

> very clear memory of my surgery at age 10. The last surgery was the

> one that was most successful. It changed the look of my eyes

> drastically.

>

> That was 15 years ago, so I can't even imagine the technology that

> there is now! As I have gotten older and my face has matured, my

> eyes definitely look bigger than they ever did. The doctor had told

> my parents that would happen but who really knew if it would. I can

> honestly say that I look the best I have ever looked.

>

> I have been reading all the messages posted and wish that this

> resource was around when I was growing up. I would have loved to be

> able to talk with others about what I was going through. I always

> had a ton of friends but it was the strangers that really got to

> me. " What's wrong with your eyes? " " Are you retarded or

> something " ?; i would get these comments and other like it quite

> often. It really hurt but luckily I had a very supportive family and

> great friends who helped me through it definitely didn't stop me from

> anything...I was involved in all types of sports (soccer, softball,

> gymnastics, sking,etc) and always had a great attitude!

>

> So, that's a little history about me. I would love to chat with

> other e females who have pof or other problems conceiving as I am

> concerned that I will not be able to have kids. I also have a

> concern that there are other things linked to BPES that I am not

> aware of. Since I have grown up with BPES, i would also be happy to

> answer any questions anyone has.

>

> I have also posted photos of me on the board. When I go to my

> parents house, I can get photos of my from when I was younger to show

> the difference.

>

>

>

>

>

>

[Guest guest]

I posted a picture of Nataley when she was 3 years old. I am

tracking down some of when she was an infant.

Sally

> Hi sally...Do you have any pics of your wee daughter? would love

to see them if you do:)...our son is ethan...there is a pic of him

posted on the site...he is 7 months old:) a happy wee guy, who

seems to be developing normal so far...well thats comparing to our

1st son tyler who is 4 years old, he doesn't have bleph, no one in

our family does? don't know where it came from!....

> blepharophimosis New Member

>

>

> My name is Sally and my daughter, Nataley, was diagnosed at the

age

> of 2. She has a very mild case of Blepharophimosis. We

fortunately

> do not have to have surgery. The doctors feel that if she

desires

> to change her appearance, she could make that decision when she

is

> old enough.

>

> I always knew there was something a little different about the

way

> she looked. The space between her eyes is very wide and her

eyelids

> are droopy. I asked her pediatrician when she was an infant if

I

> should be concerned and he told me that she just had a wide

nasal

> base and not to worry because she was meeting all her mile

stones.

>

> We eventually had to go to an ear, nose and throat doc who took

one

> look at her and had us in a genticists office with a month.

Many

> people wondered if she had Downs Syndrome. We eventually got a

> diagnosis, but unfortuately very little information about what

we

> are dealing with.

>

> We are dealing with a variety of issues with my daughter and are

> wondering if any of them are related to the Bleph. She is very

> small. She just recently moved into the 5th percentile in

weight.

> The geneticist predicts that she won't make 5 foot. She is also

> developmentally delayed by about a year and a half. She has

also

> been diagnosed with ADHD.

>

> I guess my question is can all of this stuff be linked or do I

have

> a child with a variety of unrelated medical issues?

>

> Thanks to anyone who can enlighten me about what I am dealing

with.

>

> Sally

>

>

>

>

>

[Guest guest]

Sally,

What a beautiful girl you have! Thank you for posting her picture.

Sheila (¡Çs Mom)

blepharophimosis Re:

New Member

I posted a picture of Nataley when she was 3 years

old. I am

tracking down some of when she was an

infant.

Sally

> Hi sally...Do you have any pics of your wee

daughter? would love

to see them if you do:)...our son is ethan...there

is a pic of him

posted on the site...he is 7 months old:) a

happy wee guy, who

seems to be developing normal so far...well thats

comparing to our

1st son tyler who is 4 years old, he doesn't have

bleph, no one in

our family does? don't know where it came

from!....

> blepharophimosis New

Member

>

>

> My name is Sally and my daughter,

Nataley, was diagnosed at the

age

> of 2. She has a very mild

case of Blepharophimosis. We

fortunately

> do not have to have

surgery. The doctors feel that if she

desires

> to change her appearance, she

could make that decision when she

is

> old enough.

>

> I always knew there was something

a little different about the

way

> she looked. The space

between her eyes is very wide and her

eyelids

> are droopy. I asked her

pediatrician when she was an infant if

I

> should be concerned and he told

me that she just had a wide

nasal

> base and not to worry because she

was meeting all her mile

stones.

>

> We eventually had to go to an

ear, nose and throat doc who took

one

> look at her and had us in a

genticists office with a month.

Many

> people wondered if she had Downs

Syndrome. We eventually got a

> diagnosis, but unfortuately very

little information about what

we

> are dealing with.

>

> We are dealing with a variety of

issues with my daughter and are

> wondering if any of them are

related to the Bleph. She is very

> small. She just recently

moved into the 5th percentile in

weight.

> The geneticist predicts that she

won't make 5 foot. She is also

> developmentally delayed by about

a year and a half. She has

also

> been diagnosed with ADHD.

>

> I guess my question is can all of

this stuff be linked or do I

have

> a child with a variety of

unrelated medical issues?

>

> Thanks to anyone who can

enlighten me about what I am dealing

with.

>

> Sally

>

>

>

>

>

[Guest guest]

Thanks...her cute little smile is deceiving...she is really a little handful! But aren't they all!

Sallymathias <mathias@...> wrote:

Sally,

What a beautiful girl you have! Thank you for posting her picture.

Sheila (¡Çs Mom)

-----Original Message-----From: Sally [mailto:sallydiane2003@...] Sent: Thursday, September 11, 2003 8:38 AMblepharophimosis Subject: blepharophimosis Re: New Member

I posted a picture of Nataley when she was 3 years old. I am tracking down some of when she was an infant. Sally> Hi sally...Do you have any pics of your wee daughter? would love to see them if you do:)...our son is ethan...there is a pic of him posted on the site...he is 7 months old:) a happy wee guy, who seems to be developing normal so far...well thats comparing to

our 1st son tyler who is 4 years old, he doesn't have bleph, no one in our family does? don't know where it came from!....> blepharophimosis New Member> > > My name is Sally and my daughter, Nataley, was diagnosed at the age > of 2. She has a very mild case of Blepharophimosis. We fortunately > do not have to have surgery. The doctors feel that if she desires > to change her appearance, she could make that decision when she is > old enough. > > I always knew there was something a little different about the way > she looked. The space between her eyes is very wide and her eyelids

> are droopy. I asked her pediatrician when she was an infant if I > should be concerned and he told me that she just had a wide nasal > base and not to worry because she was meeting all her mile stones.> > We eventually had to go to an ear, nose and throat doc who took one > look at her and had us in a genticists office with a month. Many > people

wondered if she had Downs Syndrome. We eventually got a > diagnosis, but unfortuately very little information about what we > are dealing with.> > We are dealing with a variety of issues with my daughter and are > wondering if any of them are related to the Bleph. She is very > small. She just recently moved into the 5th percentile in weight. > The geneticist predicts that she won't make 5 foot. She is also > developmentally delayed by about a year and a half. She has also > been diagnosed with ADHD. > > I guess my question is can all of this stuff be linked or do I have > a child with a variety of unrelated medical issues?> > Thanks to anyone who can enlighten me about what I am dealing with.> > Sally> > > > >

[Guest guest]

Hi Suzy, here are some of our experiences:

>When I questioned him about Type I and Type II he said he had never heard

>of " Type I or II " . Also, he stated that fertility was in no way

>connected.

He has definitely no idea what he is talking about ... we made similar

experiences, but on the other hand ophthalmologists are no geneticists and

also no endocrinologists.

Here a few lines from our geneticists letter:

" In BPES two types are known. In BPES Type I the eyelid malformation is

associated with female infertility caused by premature ovarian failure. "

(->This means women are fertile for a while but have an earlier menopause.)

" In BPES type II only the eyelid malformation is seen. "

There are many articles in medical journals on the net about this e.g. in

PubMed or genetics.nature.com

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

0635488 & dopt=Abstract

http://www.mstp.nwu.edu/m1jc_2002/papers/Pruiett_Mayo.pdf

>To add to my confusion, he was very reluctant to discuss

>any upcoming procedures to correct her bleph which I am very curious

>and anxious about. Can anyone clear these matters up for me?

Actually we are having the same problem. No one seems to be able to explain

the procedures at least not the ophthalmologists. You have to talk to the

surgeons. It is hard to find a surgeon who has experience with bleph (at

least in Germany ...). Don’t give up searching.

The ophthalmologists seem to be good for surveying the vision problems

only...

>Also, her Dr. said that Lili won't have any procedures done until

>she is 3-4 years old. This is fine by me so long as that's what's

>in Lillian’s best interest.

This is what " they " recommended us, too. You get better results when the

skin and face are more developed

My question however is, what is the big

>determining factor for when the surgery is performed? Obviously the

>severity of bleph, as I've seen that some babies can open their eyes

>a mere 1 mm, but my daughter holds a remarkable resemblence .....

" They " told us that as soon as the pupils are uncovered enough and there are

no sight problems it is better to wait with surgery until age 5 or 6.

Hope I could help.

Anja

_________________________________________________________________

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[Guest guest]

Feel free to correct me......for I am learning too

Type 1 is companioned with AMENORREAH...

I have my old medical records from the 1960s that state I personally have TYPE 1. What I am unclear on is in 2004 withen the medical world if a delineation of type1 and or type 2 is current?

mysuzy_q <mysuzy_q@...> wrote: Hello to you all! First off, thanks to each and every one of you for sharing your info and personal stories. I joined the group a couple of weeks ago and have been keeping up with all of the posted messages. I've already learned so much from this group! My beautiful daughter, Liliana, who is almost 8 months has been diagnosed with BPEI. I've found it quite difficult to find much information on bleph or it's corrective procedures. This group site has proved to be the most enlightening source by far! I still have many questions, and quite honestly, I am beginning to question my daughter's ped. opthamologist's knowledge on bleph. When I questioned him about Type I and Type II he said he had never heard of "Type I or II". Also, he stated that fertility was in no way connected. To add

to my confusion, he was very reluctant to discuss any upcoming procedures to correct her bleph which I am very curious and anxious about. Can anyone clear these matters up for me? Also, her Dr. said that Lili won't have any procedures done until she is 3-4 years old. This is fine by me so long as that's what's in Liliana's best interest. My question however is, what is the big determining factor for when the surgery is performed? Obviously the severity of bleph, as I've seen that some babies can open their eyes a mere 1 mm, but my daughter holds a remarkable resemblence to Tailynn not only in overall appearance but in the size of her eyes as well. As I understand, Tailynn just had her first surgery (congrats on the great results!) whereas Lili's are years away. So, in general, is it better to hold off on the surgeries or get them done at an earlier age? I have so many questions

- someone please help me!!!! I plan to make an appt with another opthamologist this week in order to get a second opinion and hopefully get some more questions answered. I can already tell that you're a great bunch of folks! Thanks again! ~SuzyTuson, AZ

[Guest guest]

ANJA

WOW this is the web I have been reaching for!..........its always been there and I have probably been told about it befor LOL....

I just had not seen it till you placed it right under my nose!.........THANK YOU!

Anja Shahin <anjashahin@...> wrote: Hi Suzy, here are some of our experiences:>When I questioned him about Type I and Type II he said he had never heard>of "Type I or II". Also, he stated that fertility was in no way>connected.He has definitely no idea what he is talking about ... we made similar experiences, but on the other hand ophthalmologists are no geneticists and also no endocrinologists.Here a few lines from our geneticists letter:"In BPES two types are known. In BPES Type I the eyelid malformation is associated with female infertility caused by premature ovarian failure." (->This means women are fertile for a while but have an earlier menopause.) "In BPES type II only the eyelid malformation is seen."There are many articles in medical journals on the net about this e.g. in PubMed or genetics.nature.comhttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=10635488 & dopt=Abstracthttp://www.mstp.nwu.edu/m1jc_2002/papers/Pruiett_Mayo.pdf>To add to my confusion, he was very reluctant to discuss>any upcoming procedures to correct her bleph which I am very curious>and anxious about. Can anyone clear these matters up for me?Actually we are having the same problem. No one seems to be able to explain the procedures at least not the ophthalmologists. You have to talk to the surgeons. It is hard to find a surgeon who has experience with bleph (at least in Germany ...). Don’t give up searching.The ophthalmologists seem to be good for surveying the vision problems only...>Also, her Dr.

said that Lili won't have any procedures done until>she is 3-4 years old. This is fine by me so long as that's what's>in Lillian’s best interest.This is what "they" recommended us, too. You get better results when the skin and face are more developedMy question however is, what is the big>determining factor for when the surgery is performed? Obviously the>severity of bleph, as I've seen that some babies can open their eyes>a mere 1 mm, but my daughter holds a remarkable resemblence ....."They" told us that as soon as the pupils are uncovered enough and there are no sight problems it is better to wait with surgery until age 5 or 6.Hope I could help.Anja_________________________________________________________________E-Mails sind Ihnen nicht schnell genug? http://www.msn.de/messenger MSN Messenger - Kommunikation in

Echtzeit

[Guest guest]

I found this on the web - might be useful to you

Secondary Amenorrhea = Lack of menstrual periods in a woman that has had periods previously

Secondary amenorrhea is the absence of menstrual periods for 6 months in a woman who had previously been regular, or for 12 months in a woman who had irregular periods. Primary amenorrhea is when the woman has never had a period in her life.

The above came from: http://www.advancedfertility.com/amenor.htm

Changing subject slightly ....

I asked the genetic doctor at "The Institute for Child Health" (in London, England) for more info about type 1 and type 2.

They told me that the only difference between type 1 and type 2 is the fertility in females subject. However, that was three years ago.

I have further information that suggests that opinion has changed a bit. But I don't feel to comfortable about quoting what I have been told.

My suggestion is that people should ask their genetics doctor to research this subject and explain it to them. I would feel very uncomfortable if I inadvertantly misled anyone about this.

Shireen

-----Original Message-----From: anna [mailto:annaloretta17692@...]Sent: 03 February 2004 18:00blepharophimosis Subject: Re: blepharophimosis New Member

Feel free to correct me......for I am learning too

Type 1 is companioned with AMENORREAH...

I have my old medical records from the 1960s that state I personally have TYPE 1. What I am unclear on is in 2004 withen the medical world if a delineation of type1 and or type 2 is current?

mysuzy_q <mysuzy_q@...> wrote: Hello to you all! First off, thanks to each and every one of you for sharing your info and personal stories. I joined the group a couple of weeks ago and have been keeping up with all of the posted messages. I've already learned so much from this group! My beautiful daughter, Liliana, who is almost 8 months has been diagnosed with BPEI. I've found it quite difficult to find much information on bleph or it's corrective procedures. This group site has proved to be the most enlightening source by far! I still have many questions, and quite honestly, I am beginning to question my daughter's ped. opthamologist's knowledge on bleph. When I questioned him about Type I and Type II he said he had never heard of "Type I or II". Also, he stated that fertility was in no way connected. To add to my confusion, he was very reluctant to discuss any upcoming procedures to correct her bleph which I am very curious and anxious about. Can anyone clear these matters up for me? Also, her Dr. said that Lili won't have any procedures done until she is 3-4 years old. This is fine by me so long as that's what's in Liliana's best interest. My question however is, what is the big determining factor for when the surgery is performed? Obviously the severity of bleph, as I've seen that some babies can open their eyes a mere 1 mm, but my daughter holds a remarkable resemblence to Tailynn not only in overall appearance but in the size of her eyes as well. As I understand, Tailynn just had her first surgery (congrats on the great results!) whereas Lili's are years away. So, in general, is it better to hold off on the surgeries or get them done at an earlier age? I have so many questions - someone please help me!!!! I plan to make an appt with another opthamologist this week in order to get a second opinion and hopefully get some more questions answered. I can already tell that you're a great bunch of folks! Thanks again! ~SuzyTuson, AZ

[Guest guest]

Shireen

Thank You for even further explaining and sharing for us. Off to read some more!

in Washington State USA

andy.bowles@... wrote:

I found this on the web - might be useful to you Secondary Amenorrhea = Lack of menstrual periods in a woman that has had periods previously

Secondary amenorrhea is the absence of menstrual periods for 6 months in a woman who had previously been regular, or for 12 months in a woman who had irregular periods. Primary amenorrhea is when the woman has never had a period in her life.

The above came from: http://www.advancedfertility.com/amenor.htm

Changing subject slightly ....

I asked the genetic doctor at "The Institute for Child Health" (in London, England) for more info about type 1 and type 2.

They told me that the only difference between type 1 and type 2 is the fertility in females subject. However, that was three years ago.

I have further information that suggests that opinion has changed a bit. But I don't feel to comfortable about quoting what I have been told.

My suggestion is that people should ask their genetics doctor to research this subject and explain it to them. I would feel very uncomfortable if I inadvertantly misled anyone about this.

Shireen

-----Original Message-----From: anna [mailto:annaloretta17692@...]Sent: 03 February 2004 18:00blepharophimosis Subject: Re: blepharophimosis New Member

Feel free to correct me......for I am learning too

Type 1 is companioned with AMENORREAH...

I have my old medical records from the 1960s that state I personally have TYPE 1. What I am unclear on is in 2004 withen the medical world if a delineation of type1 and or type 2 is current?

mysuzy_q <mysuzy_q@...> wrote: Hello to you all! First off, thanks to each and every one of you for sharing your info and personal stories. I joined the group a couple of weeks ago and have been keeping up with all of the posted messages. I've already learned so much from this group! My beautiful daughter, Liliana, who is almost 8 months has been diagnosed with BPEI. I've found it quite difficult to find much information on bleph or it's corrective procedures. This group site has proved to be the most enlightening source by far! I still have many questions, and quite honestly, I am beginning to question my daughter's ped. opthamologist's knowledge on bleph. When I questioned him about Type I and Type II he said he had never heard of "Type I or II". Also, he stated that fertility was in no way connected. To add

to my confusion, he was very reluctant to discuss any upcoming procedures to correct her bleph which I am very curious and anxious about. Can anyone clear these matters up for me? Also, her Dr. said that Lili won't have any procedures done until she is 3-4 years old. This is fine by me so long as that's what's in Liliana's best interest. My question however is, what is the big determining factor for when the surgery is performed? Obviously the severity of bleph, as I've seen that some babies can open their eyes a mere 1 mm, but my daughter holds a remarkable resemblence to Tailynn not only in overall appearance but in the size of her eyes as well. As I understand, Tailynn just had her first surgery (congrats on the great results!) whereas Lili's are years away. So, in general, is it better to hold off on the surgeries or get them done at an earlier age? I have so many questions

- someone please help me!!!! I plan to make an appt with another opthamologist this week in order to get a second opinion and hopefully get some more questions answered. I can already tell that you're a great bunch of folks! Thanks again! ~SuzyTuson, AZ

[Guest guest]

Hi Suzy....Well I am by no means an expert on when to have surgery, just going by what our Dr said....suggests holding off until our son Ethan is about 4 years old, he said the older they are the better results, as the skin is more mature, but it first and formost depends on your own childs severity of blephs, Ethan has a good chin-up head posture which allows his pupils to be exposed enough to not affect his eye-sight, he just had his 1 year appt 2 days ago:) thats when the dr said about surgery just before he turns 4....Do you have a pichure of Liliana you could post at the bleph site??? always so great to see new faces:)

-- blepharophimosis New Member

Hello to you all! First off, thanks to each and every one of you for sharing your info and personal stories. I joined the group a couple of weeks ago and have been keeping up with all of the posted messages. I've already learned so much from this group! My beautiful daughter, Liliana, who is almost 8 months has been diagnosed with BPEI. I've found it quite difficult to find much information on bleph or it's corrective procedures. This group site has proved to be the most enlightening source by far! I still have many questions, and quite honestly, I am beginning to question my daughter's ped. opthamologist's knowledge on bleph. When I questioned him about Type I and Type II he said he had never heard of "Type I or II". Also, he stated that fertility was in no way connected. To add to my confusion, he was very reluctant to discuss any upcoming procedures to correct her bleph which I am very curious and anxious about. Can anyone clear these matters up for me? Also, her Dr. said that Lili won't have any procedures done until she is 3-4 years old. This is fine by me so long as that's what's in Liliana's best interest. My question however is, what is the big determining factor for when the surgery is performed? Obviously the severity of bleph, as I've seen that some babies can open their eyes a mere 1 mm, but my daughter holds a remarkable resemblence to Tailynn not only in overall appearance but in the size of her eyes as well. As I understand, Tailynn just had her first surgery (congrats on the great results!) whereas Lili's are years away. So, in general, is it better to hold off on the surgeries or get them done at an earlier age? I have so many questions - someone please help me!!!! I plan to make an appt with another opthamologist this week in order to get a second opinion and hopefully get some more questions answered. I can already tell that you're a great bunch of folks! Thanks again! ~SuzyTuson, AZ

[Guest guest]

andy.bowles@... wrote:

> *They told me that the only difference between type 1 and type 2 is

> the fertility in females subject. However, that was three years ago.*

Curiouser and curiouser. In my older articles, Oley & Baraitser (that's

the article you sent me, Shireen, with pictures of you in it - maybe

worth a re-read) suggested (admittedly in 1988) the differences are:

Type I: More common; transmitted by males only; affected famales

infertile; most children male, 'most' of whom (100% - I'd certainly call

that 'most'!) are affected.

Type II: Transmitted by both males and females; most children female,

most of whom (96.5%) are affected.

Some really old (1950s/1960s) articles suggest there are 3 types, based

on symptoms rather than on genetic inheritance. Let's not confuse things

with those.

Have you managed to find any more recent research papers? I haven't

looked for a while, I must say.

> *I have further information that suggests that opinion has changed a

> bit. But I don't feel to comfortable about quoting what I have been

> told.*

>

> *My suggestion is that people should ask their genetics doctor to

> research this subject and explain it to them. I would feel very

> uncomfortable if I inadvertantly misled anyone about this.*

I distinctly recall my genetics counsellor telling me that there was a

50% chance of me passing on BPEI. This is clearly at odds with what I've

read (as above). And no mention of Type I/II. As with most medicos -

including genetic and ophthalmic ones - one must take what they say with

a grain of salt and be vigilant in one's own research. Not easy, of course.

Time for a cup of tea and a lie down.

Rob

[Guest guest]

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]

Dear

My heart goes out to you. how to cope the the unwelcome stares and

comments is a huge concern for me, for Aedan. Do you have any ideas on how I

could

help Aedan Through this? perhaps things that worked for you or perhaps

things you would have done or said differently? What did your parents do that

worked for you or didn't work. I just tried to deal with a situation in my

daughter, Raina's classroom. But unfortuntly it wasn't a welcome idea. Some

children were making fun of Aedan and I asked the teacher if I could talk with

the

whole class and perhaps answer questions so that curiosities would be saited

and Aedan's eyes would'nt be such an unknown. Do you think that being direct

and open in front of Aedan when these situations arise is a good idea?

thankyou

[Guest guest]

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]

>They told me that the only difference between type 1 and type 2 is the

>fertility in females subject. However, that was three years ago.

>

>I have further information that suggests that opinion has changed a bit.

>But

>I don't feel to comfortable about quoting what I have been told.

>

>My suggestion is that people should ask their genetics doctor to research

>this subject and explain it to them. I would feel very uncomfortable if I

>inadvertantly misled anyone about this.

>

>Shireen

Dear Shireen,

I can understand that you do not want to mislead anyone about this, but on

the other hand this group is to share new information. I would really

appreciate you letting us know what further information you have about the

changed opinion in this subject. The genetic counselors are no experts in

BPES either (at least not mine, no use to asking them) many of them do not

know more about it than the already mentioned stuff.

Please do not feel uncomfortable about quoting what you have been told, I am

sure all of us are educated enough to make the right thing out of it.....

(Hope my English is not too confusing ...)

Anja

_________________________________________________________________

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Emoticons und Hintergründe kostenlos downloaden!

[Guest guest]

agrees with Anja............when and if your comfortable sharing Shireen.

son of Washington USA

Anja Shahin <anjashahin@...> wrote: >They told me that the only difference between type 1 and type 2 is the>fertility in females subject. However, that was three years ago.>>I have further information that suggests that opinion has changed a bit. >But>I don't feel to comfortable about quoting what I have been told.>>My suggestion is that people should ask their genetics doctor to research>this subject and explain it to them. I would feel very uncomfortable if I>inadvertantly misled anyone about this.>>ShireenDear Shireen,I can understand that you do not want to mislead anyone about this, but on the other hand this group is to share new information. I would really appreciate you letting us know what further information you have about the changed opinion in this subject. The genetic counselors are no experts in

BPES either (at least not mine, no use to asking them) many of them do not know more about it than the already mentioned stuff.Please do not feel uncomfortable about quoting what you have been told, I am sure all of us are educated enough to make the right thing out of it.....(Hope my English is not too confusing ...)Anja_________________________________________________________________Die ultimative Fan-Seite für den MSN Messenger http://www.ilovemessenger.de Emoticons und Hintergründe kostenlos downloaden!