Re: New Member-About me!!

[Guest guest]

Hello Nancie, my name is and our son Aedan is bpes enhanced as well. I know that if your daughter has severe ptosis (droopy lids) as my son did it can affect her vision if not lifted. Aedan had surgery at 10 weeks to correct this and may need more later as his face grows and perhaps his lids droop again. Some of the surgery is called "cosmetic" but its nessecity is individual to each person and family. Aedan is 5 now and beautiful. BUT , kids make fun of him .. sometimes.. and that hurts....but will he be stronger for it? I am still debating within myself if I want to make his eyes look more normal or allow him to make the decision for himself later. I know that with females, there are more aspects that I have not followed closely, but im sure you will find answers here. Congratulations on the birth of your daughter. See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi Nancie, My name is Tonikka and first i would like to welcome you to the group.this group of individuals is very resourceful and very helpful with your questions, one thing i will say is that there are many of us on here with varying degrees of BPES whether it be themselves who have it, sons, daughter sisters mothers  etc..., all whom are different , many have had surgery and multiple surgeries and many have had nothing.that being said my son Lynden was 5 weeks old when he had his first surgery as his lids were really impairing his vision so it was MANDATORY for him to get it, since then he has 3 other surgeries gradually making his eye openings bigger....... from here on out its pretty much up to him (he is now 10) if he wants to do any further surgery!! hope yo uget all you questions answeredTonikka (Lynden) edmonton CANADAOn 28-Sep-07, at 12:40 PM, n_cottrill wrote:Hello everyone!! My name is Nancie Bentley. I am 20 years old and live in Belton, Missouri, USA. I just found out today that my daughter has Blepharophimosis. Zakiyah is 3 months old. She inherited her "small eyes" from her daddy! I really shouldnt say that I found out that she had this condition today, It is better put that I found out that her "small eyes" as I call them, acually have a name. My husband also has this and he never knew that there was a name for it either! I am very happy that I have found this support group because I know nothing about the condition, what is can cause, how I can help my daughter and husband, or if I can help at all. I have so many questions, and most of all I am scared for my daughter because I dont know what this disorder can cause, or how bad it can get, even though she seems perfectly healthy and happy. I really dont have anyone to speak to about it either. Although my husband has it, his family kept him very sheltered and they knew that he had a disorder to cause his small eyes but never really looked into it. He doesnt really like to speak about it. It makes me upset and I feel bad for him, but I want answers at the same time. All he knows is that the doctors wanted to do surgery when he was little and his parents did not agree. Now that we have a daughter, he says that she is fine, that I shouldnt take her to the doctors because all they will do is want her to have surgery to make her "appearence" better, but I dont know if this is true! Is the surgery only cosmetic or is it benefitial to her health? I dont know! So many questions and no answers. This is why I need SUPPORT for my family, and I need answers!! Anyone that can tell me anything, please do, I would appreciate it SOOO much!! Tonikka & ChrisLynden,Hunter,Avery

[Guest guest]

n_cottrill wrote:

>

> Hello everyone!! My name is Nancie Bentley.

Howdy, Nancie. Welcome.

> My husband also has this and he never knew that there was a

> name for it either!

A common phenomenon, that. I had to explicitly ask my surgeon, when I

was 25, what this thing was called. I get the feeling that many doctors

are reluctant to empower their patients too much with information.

> I am very happy that I have found this support group because I know

> nothing about the condition, what is can cause, how I can help my

> daughter and husband, or if I can help at all. I have so many

> questions, and most of all I am scared for my daughter because I dont

> know what this disorder can cause, or how bad it can get, even though

> she seems perfectly healthy and happy. I really dont have anyone to

> speak to about it either.

BPES really can't cause very many other things. If the ptosis (droopy

eyelids) is severe enough to cover the pupil, it can lead to vision

problems. There are two types of BPES, and one of them is associated

with fertility problems (POF: premature ovarian failure) in women.

That's about it.

> Is the

> surgery only cosmetic or is it benefitial to her health?

If the droopy eyelids are interfering with vision, or causing back/neck

problems by having to lift the head to see, then ptosis repair would be

beneficial for health. There might be other complications or impacts

that would inspire a surgeon to want to correct it early. Most BPES

corrections are done just before school, for important social reasons.

Many people associate " cosmetic " surgery with the frivolous nonsense

that goes on in Hollywood, etc., which is done for very different

reasons than BPES correction is. There are other types of benefits

besides purely medical ones.

Your questions from your Careplace (where you're " " , not Nancie, I

see) posting:

(I don't care for Careplace, that's why I'm answering them here)

> I have many questions: Is this condition very common?

Very rare. Most of us will never accidentally meet anyone else with

BPES. I'd venture to suggest that even most ophthalmic surgeons never

see a case in their lives.

> What are the

> chances of our other children inheriting this in the future?

If a parent has BPES, each of their children has a 50% chance of also

having BPES.

> Is the

> surgery a complicated procedure, and how long does it take to recover?

There are two main operations performed: (1) one to correct the ptosis

(droopy eyelids), and (2) one to correct the

blepharophimosis/telecanthus (small, far apart, eye openings) and

epicanthus-inversus (inverted skin folds) in the one operation. They're

not long operations, but are " fiddly " (delicate) and highly specialised

- it's hard to find a surgeon with good experience in them. The

techniques are well-established, though, and haven't changed radically

since the '60s. Recovery is quick as the surgery isn't very invasive -

it's often just day-surgery these days, or an overnight stay.

> Is there any other side effect to BPES?

See above.

> I have read that it can cause

> infertility in females,

As above, one type is associated with premature ovarian failure.

> hearing loss, blindness, and growing

> disorders, to name a few,

None of these are part of, or caused by, 'pure' BPES. There are any

number of other things that a person can suffer from as well as BPES (by

sheer coincidence), but they aren't part of BPES or caused by BPES. In

some cases, BPES can be just part of a larger syndrome (but not the

other way round).

> but my daughter seems perfectly healthy,

> just with small eyes!!

As with the majority of we BPES-enhanced folks.

These are great questions, by the way. Thanks for asking. Got any others?

Rob W

Sydney, Oz

[Guest guest]

Thank You so much for answering my questions, I feel a bit relieved

knowing that it really is not too serious, I have faith that my

daughter and future children if any will live normal lifes. If I

think of any other questions I will be sure and ask you!! Thanks

again,

> >

> > Hello everyone!! My name is Nancie Bentley.

>

> Howdy, Nancie. Welcome.

>

> > My husband also has this and he never knew that there was a

> > name for it either!

>

> A common phenomenon, that. I had to explicitly ask my surgeon, when

I

> was 25, what this thing was called. I get the feeling that many

doctors

> are reluctant to empower their patients too much with information.

>

> > I am very happy that I have found this support group because I

know

> > nothing about the condition, what is can cause, how I can help my

> > daughter and husband, or if I can help at all. I have so many

> > questions, and most of all I am scared for my daughter because I

dont

> > know what this disorder can cause, or how bad it can get, even

though

> > she seems perfectly healthy and happy. I really dont have anyone

to

> > speak to about it either.

>

> BPES really can't cause very many other things. If the ptosis

(droopy

> eyelids) is severe enough to cover the pupil, it can lead to vision

> problems. There are two types of BPES, and one of them is

associated

> with fertility problems (POF: premature ovarian failure) in women.

> That's about it.

>

> > Is the

> > surgery only cosmetic or is it benefitial to her health?

>

> If the droopy eyelids are interfering with vision, or causing

back/neck

> problems by having to lift the head to see, then ptosis repair

would be

> beneficial for health. There might be other complications or

impacts

> that would inspire a surgeon to want to correct it early. Most BPES

> corrections are done just before school, for important social

reasons.

> Many people associate " cosmetic " surgery with the frivolous

nonsense

> that goes on in Hollywood, etc., which is done for very different

> reasons than BPES correction is. There are other types of benefits

> besides purely medical ones.

>

> Your questions from your Careplace (where you're " " , not

Nancie, I

> see) posting:

> (I don't care for Careplace, that's why I'm answering them here)

>

> > I have many questions: Is this condition very common?

>

> Very rare. Most of us will never accidentally meet anyone else with

> BPES. I'd venture to suggest that even most ophthalmic surgeons

never

> see a case in their lives.

>

> > What are the

> > chances of our other children inheriting this in the future?

>

> If a parent has BPES, each of their children has a 50% chance of

also

> having BPES.

>

> > Is the

> > surgery a complicated procedure, and how long does it take to

recover?

>

> There are two main operations performed: (1) one to correct the

ptosis

> (droopy eyelids), and (2) one to correct the

> blepharophimosis/telecanthus (small, far apart, eye openings) and

> epicanthus-inversus (inverted skin folds) in the one operation.

They're

> not long operations, but are " fiddly " (delicate) and highly

specialised

> - it's hard to find a surgeon with good experience in them. The

> techniques are well-established, though, and haven't changed

radically

> since the '60s. Recovery is quick as the surgery isn't very

invasive -

> it's often just day-surgery these days, or an overnight stay.

>

> > Is there any other side effect to BPES?

>

> See above.

>

> > I have read that it can cause

> > infertility in females,

>

> As above, one type is associated with premature ovarian failure.

>

> > hearing loss, blindness, and growing

> > disorders, to name a few,

>

> None of these are part of, or caused by, 'pure' BPES. There are any

> number of other things that a person can suffer from as well as

BPES (by

> sheer coincidence), but they aren't part of BPES or caused by BPES.

In

> some cases, BPES can be just part of a larger syndrome (but not the

> other way round).

>

> > but my daughter seems perfectly healthy,

> > just with small eyes!!

>

> As with the majority of we BPES-enhanced folks.

>

> These are great questions, by the way. Thanks for asking. Got any

others?

>

> Rob W

> Sydney, Oz

>

[Guest guest]

Hi, this is Janice from Indiana, US and I don't think you can say for sure BPES does not have other problems. My father had a heart attack, they tried to do heart cath but his arteries were so small they couldn't get the smallest heart cath they had all the way to his heart. My sister had a chest xray and was told she had the smallest lungs on an adult the xray tech had ever seen. And I'm sorry but I think depression can be linked to BPES. Maybe I have a different view because I am a woman but I also know what my brother has went through with this disorder. BPES isn't as rare as you think. I have seen a woman in my home town with this. Also I get asked all the time, "Are you from ville?" My surgeon in Indianapolis, IN told me in the 1980's he had several cases of BPES. Also, as a woman, when you have POF, that means NO hormones or very little. Several things can be caused due to little or no hormones. I like this

site because we all can talk about this disorder and our views. Just one more thing we have in common. JaniceRob <r.watson@...> wrote: n_cottrill wrote:> > Hello everyone!! My name is Nancie Bentley.Howdy, Nancie. Welcome.> My husband also has this and he never knew that there was a> name for it either!A common phenomenon, that. I had to explicitly ask my surgeon, when I was 25, what this thing was called. I get the feeling that many doctors are reluctant to empower their

patients too much with information.> I am very happy that I have found this support group because I know> nothing about the condition, what is can cause, how I can help my> daughter and husband, or if I can help at all. I have so many> questions, and most of all I am scared for my daughter because I dont> know what this disorder can cause, or how bad it can get, even though> she seems perfectly healthy and happy. I really dont have anyone to> speak to about it either.BPES really can't cause very many other things. If the ptosis (droopy eyelids) is severe enough to cover the pupil, it can lead to vision problems. There are two types of BPES, and one of them is associated with fertility problems (POF: premature ovarian failure) in women. That's about it.> Is the> surgery only cosmetic or is it benefitial to her health?If the droopy eyelids are interfering with vision, or

causing back/neck problems by having to lift the head to see, then ptosis repair would be beneficial for health. There might be other complications or impacts that would inspire a surgeon to want to correct it early. Most BPES corrections are done just before school, for important social reasons. Many people associate "cosmetic" surgery with the frivolous nonsense that goes on in Hollywood, etc., which is done for very different reasons than BPES correction is. There are other types of benefits besides purely medical ones.Your questions from your Careplace (where you're "", not Nancie, I see) posting:(I don't care for Careplace, that's why I'm answering them here)> I have many questions: Is this condition very common?Very rare. Most of us will never accidentally meet anyone else with BPES. I'd venture to suggest that even most ophthalmic surgeons never see a case in their lives.>

What are the> chances of our other children inheriting this in the future?If a parent has BPES, each of their children has a 50% chance of also having BPES.> Is the> surgery a complicated procedure, and how long does it take to recover?There are two main operations performed: (1) one to correct the ptosis (droopy eyelids), and (2) one to correct the blepharophimosis/telecanthus (small, far apart, eye openings) and epicanthus-inversus (inverted skin folds) in the one operation. They're not long operations, but are "fiddly" (delicate) and highly specialised - it's hard to find a surgeon with good experience in them. The techniques are well-established, though, and haven't changed radically since the '60s. Recovery is quick as the surgery isn't very invasive - it's often just day-surgery these days, or an overnight stay.> Is there any other side effect to BPES?See

above.> I have read that it can cause> infertility in females,As above, one type is associated with premature ovarian failure.> hearing loss, blindness, and growing> disorders, to name a few,None of these are part of, or caused by, 'pure' BPES. There are any number of other things that a person can suffer from as well as BPES (by sheer coincidence), but they aren't part of BPES or caused by BPES. In some cases, BPES can be just part of a larger syndrome (but not the other way round).> but my daughter seems perfectly healthy,> just with small eyes!!As with the majority of we BPES-enhanced folks.These are great questions, by the way. Thanks for asking. Got any others?Rob WSydney, Oz

Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us.

[Guest guest]

Hi, Nancie my name is Janice Eddy and I am from Indiana. I have 1 brother and 2 sisters with BPES. My family did not talk about this disorder either. But when I got older and married I wanted to know more so I went to a geneticist. He told me most females a sterile or at least their best chance of having children are when they are very young. Your daughter may or may not have periods when she gets older. I did but neither one of my sisters did. Please do not try to hide or pretend your daughter is not different, teach her what she has and she will learn to explain it. I believe knowledge is power. If I had known when I was in school and getting called names and being made fun of if I could have just said look I don't have a muscle like you do thats all. I also became very strong due to this disorder. My life could have been ALOT worse. I can walk, talk, learn, so what if my eyes are small (I have had surgery) but I never made fun of kids because they didn't wear the

best cloths, or have the perfect hair. Life isn't about all of that. But that doesn't mean it wasn't hard. Support and knowledge would have helped . I am more that willing to answer any questions but I don't know all the answers. BPES is a on going learning experience. My email is jlelpn03@.... Janicen_cottrill <n_cottrill@...> wrote: Hello everyone!! My name is Nancie Bentley. I am 20 years old and live in Belton, Missouri, USA. I

just found out today that my daughter has Blepharophimosis. Zakiyah is 3 months old. She inherited her "small eyes" from her daddy! I really shouldnt say that I found out that she had this condition today, It is better put that I found out that her "small eyes" as I call them, acually have a name. My husband also has this and he never knew that there was a name for it either! I am very happy that I have found this support group because I know nothing about the condition, what is can cause, how I can help my daughter and husband, or if I can help at all. I have so many questions, and most of all I am scared for my daughter because I dont know what this disorder can cause, or how bad it can get, even though she seems perfectly healthy and happy. I really dont have anyone to speak to about it either. Although my husband has it, his family kept him very sheltered and they knew that he had a disorder to cause his small

eyes but never really looked into it. He doesnt really like to speak about it. It makes me upset and I feel bad for him, but I want answers at the same time. All he knows is that the doctors wanted to do surgery when he was little and his parents did not agree. Now that we have a daughter, he says that she is fine, that I shouldnt take her to the doctors because all they will do is want her to have surgery to make her "appearence" better, but I dont know if this is true! Is the surgery only cosmetic or is it benefitial to her health? I dont know! So many questions and no answers. This is why I need SUPPORT for my family, and I need answers!! Anyone that can tell me anything, please do, I would appreciate it SOOO much!!

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Just regarding your statement saying you think depression is linked to BPES. *ANYONE* can get depression...unfortunately it is SO common nowadays. Genetically I don't think there is a connection...that's just my opinion My family...mother, sister and brother who don't have BPES all have depression and are on medication for it! I do not have BPES nor depression nor does my husband but we have a beautiful son aged 4 1/2 that does have BPES and besides having small eyelids he is no differnet from any other child his age:) He is a bundle of love, joy, affection, happiness, and laughter the list goes on.....I hope he stays that way...

-- Re: blepharophimosis New Member-About me!!

Hi, this is Janice from Indiana, US and I don't think you can say for sure BPES does not have other problems. My father had a heart attack, they tried to do heart cath but his arteries were so small they couldn't get the smallest heart cath they had all the way to his heart. My sister had a chest xray and was told she had the smallest lungs on an adult the xray tech had ever seen. And I'm sorry but I think depression can be linked to BPES. Maybe I have a different view because I am a woman but I also know what my brother has went through with this disorder. BPES isn't as rare as you think. I have seen a woman in my home town with this. Also I get asked all the time, "Are you from ville?" My surgeon in Indianapolis, IN told me in the 1980's he had several cases of BPES. Also, as a woman, when you have POF, that means NO hormones or very little. Several things can be caused due to little or no hormones.

I like this site because we all can talk about this disorder and our views. Just one more thing we have in common. JaniceRob <r.watsonbigpond (DOT) net.au> wrote:

n_cottrill wrote:> > Hello everyone!! My name is Nancie Bentley.Howdy, Nancie. Welcome.> My husband also has this and he never knew that there was a> name for it either!A common phenomenon, that. I had to explicitly ask my surgeon, when I was 25, what this thing was called. I get the feeling that many doctors are reluctant to empower their patients too much with information.> I am very happy that I have found this support group because I know> nothing about the condition, what is can cause, how I can help my> daughter and husband, or if I can help at all. I have so many> questions, and most of all I am scared for my daughter because I dont> know what this disorder can cause, or how bad it can get, even though> she seems perfectly healthy and happy. I really dont have anyone to> speak to about it either.BPES really can't cause very many other things. If the ptosis (droopy eyelids) is severe enough to cover the pupil, it can lead to vision problems. There are two types of BPES, and one of them is associated with fertility problems (POF: premature ovarian failure) in women. That's about it.> Is the> surgery only cosmetic or is it benefitial to her health?If the droopy eyelids are interfering with vision, or causing back/neck problems by having to lift the head to see, then ptosis repair would be beneficial for health. There might be other complications or impacts that would inspire a surgeon to want to correct it early. Most BPES corrections are done just before school, for important social reasons. Many people associate "cosmetic" surgery with the frivolous nonsense that goes on in Hollywood, etc., which is done for very different reasons than BPES correction is. There are other types of benefits besides purely medical ones.Your questions from your Careplace (where you're "", not Nancie, I see) posting:(I don't care for Careplace, that's why I'm answering them here)> I have many questions: Is this condition very common?Very rare. Most of us will never accidentally meet anyone else with BPES. I'd venture to suggest that even most ophthalmic surgeons never see a case in their lives.> What are the> chances of our other children inheriting this in the future?If a parent has BPES, each of their children has a 50% chance of also having BPES.> Is the> surgery a complicated procedure, and how long does it take to recover?There are two main operations performed: (1) one to correct the ptosis (droopy eyelids), and (2) one to correct the blepharophimosis/telecanthus (small, far apart, eye openings) and epicanthus-inversus (inverted skin folds) in the one operation. They're not long operations, but are "fiddly" (delicate) and highly specialised - it's hard to find a surgeon with good experience in them. The techniques are well-established, though, and haven't changed radically since the '60s. Recovery is quick as the surgery isn't very invasive - it's often just day-surgery these days, or an overnight stay.> Is there any other side effect to BPES?See above.> I have read that it can cause> infertility in females,As above, one type is associated with premature ovarian failure.> hearing loss, blindness, and growing> disorders, to name a few,None of these are part of, or caused by, 'pure' BPES. There are any number of other things that a person can suffer from as well as BPES (by sheer coincidence), but they aren't part of BPES or caused by BPES. In some cases, BPES can be just part of a larger syndrome (but not the other way round).> but my daughter seems perfectly healthy,> just with small eyes!!As with the majority of we BPES-enhanced folks.These are great questions, by the way. Thanks for asking. Got any others?Rob WSydney, Oz

Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us.

[Guest guest]

Hi Janice,

I'm agree with you

I'm french and I have the bpes type 1 (no surgeries),

with a big problems of sight

( " new mutation " find in Center for Medical Genetics,

Ghent University Hospital(Belgium))

and a french proffessor said me

that a researchers find in a

mouse genetically modified with a foxl2

*cardiac malformation

*problem of teeth

an a other problems

Best regards

Hervé

ps: excuse me but I don't speak & write correctly english

*I know two bpes with this problems

>

> Hi, this is Janice from Indiana, US and I don't think you can say

for sure BPES does not have other problems. My father had a heart

attack, they tried to do heart cath but his arteries were so small

[Guest guest]

Hello Nancie. Welcome to this amazing group. Clare Teale, Hertfordshire, UK here. I have to say that I have BPES and so does my daughter (12) my sons and husband dont. I have 2 children naturally, first at 26 and the next 28, my third son is my step son, through the natural process, even though my periods were not as they should have been. I am not going to talk about the medical side of things, because there are plenty of others that can do a much better job with me, I want to let you know about me and my daughter. Both of us are completely and utterly as we should be, a little unhappy sometimes, and little low sometimes, a little cross sometimes, but most of the time absolutely happy, confident, people. No more or less issues or problems than anyone else. I

have bought my daughter up to be confident and smile (which is me too), people that have met Emmy from this site, will agree with me I am sure. My daughter has no more issues than my son in school, infact my son has more issues and problems socially than she does. Its what we teach them that is important, its not what the BPES can do or has done that is important. All sorts of people from all sorts of walks of life deal with issues every day, none are related to BPES. Its how we deal with what we are given.. I am a personal development trainer and meet people every day with much worse self esteem issues because of lifes experiences. Nothing to do with BPES. It has never stopped me achieving anything, and it wont for the rest of my life. My daughter is the same - its what she has seen in me and learnt from me, and that is what is important. ok sorry off the soap box now. Welcome and I hope you have as much support here as I have had. Lots of love Clare Teale, HERTFORDSHIRE, UK Janice Eddy <jlelpn03@...> wrote: Hi, Nancie my name is Janice Eddy and I am from Indiana. I have 1 brother and 2 sisters with BPES. My family did not talk about this disorder either. But when I got older and married I wanted to know more

so I went to a geneticist. He told me most females a sterile or at least their best chance of having children are when they are very young. Your daughter may or may not have periods when she gets older. I did but neither one of my sisters did. Please do not try to hide or pretend your daughter is not different, teach her what she has and she will learn to explain it. I believe knowledge is power. If I had known when I was in school and getting called names and being made fun of if I could have just said look I don't have a muscle like you do thats all. I also became very strong due to this disorder. My life could have been ALOT worse. I can walk, talk, learn, so what if my eyes are small (I have had surgery) but I never made fun of kids because they didn't wear the best cloths, or have the perfect hair. Life isn't about all of that. But that doesn't mean it wasn't hard. Support and knowledge would have helped . I am more that

willing to answer any questions but I don't know all the answers. BPES is a on going learning experience. My email is jlelpn03 . Janicen_cottrill <n_cottrill > wrote: Hello everyone!! My name is Nancie Bentley. I am 20 years old and live in Belton, Missouri, USA. I just found out today that my daughter has Blepharophimosis. Zakiyah is 3 months old. She inherited her "small eyes" from her daddy! I really shouldnt say that I found out that she had this condition today, It is better put that I found out that her "small eyes" as I call them, acually have a name. My husband also has this and he never knew that there was a name for it either! I am very happy that I have found this support group because I know nothing about the

condition, what is can cause, how I can help my daughter and husband, or if I can help at all. I have so many questions, and most of all I am scared for my daughter because I dont know what this disorder can cause, or how bad it can get, even though she seems perfectly healthy and happy. I really dont have anyone to speak to about it either. Although my husband has it, his family kept him very sheltered and they knew that he had a disorder to cause his small eyes but never really looked into it. He doesnt really like to speak about it. It makes me upset and I feel bad for him, but I want answers at the same time. All he knows is that the doctors wanted to do surgery when he was little and his parents did not agree. Now that we have a daughter, he says that she is fine, that I shouldnt take her to the doctors because all they will do is want her to have surgery to make her "appearence" better, but I dont know if this

is true! Is the surgery only cosmetic or is it benefitial to her health? I dont know! So many questions and no answers. This is why I need SUPPORT for my family, and I need answers!! Anyone that can tell me anything, please do, I would appreciate it SOOO much!! oneSearch: Finally, mobile search that gives answers, not web links.

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

Hello Nancie

It's great you are finding resources to help your family. You sound

like a great mom.

My grandfather had BPES, my father has it, I have it and so does my 3

yr old daughter. We have never found any other health issues relating

to BPES. With the exception of my grandfather, all of us had surgery.

We had to, in order to see properly. There is no shame in getting the

best help you can get, I will do anything to get my daughter the

absolute best results (surgically) that I can. There is also no shame

in having BPES, it's simply how we are.

That said, it is stressful having a child who needs different medical

care than what you hoped for or planned for. It is stressful feeling

misunderstood or " different " , particularly if you don't have a good

support system. I felt depressed when my daughter was an infant, but

I also felt tremendous joy. I also think it was much more difficult

in the past when less was known about BPES. My grandfather was born

in 1915 and his childhood was more or less awful, mostly because his

mother died and he had BPES, and he never got the love or support

every child needs. An experience like that, led to depression and a

heart attack. But BPES didn't cause it. I hope you can see the

connection I am making. My family really knew next to nothing until

my daughter was born, I have a hard time understanding how that

happened!

My experience with BPES is not so bad, mostly because like many

people on this board , I have two amazing people as parents. My

mother taught me much like Clare describes teaching her children.

I am taking notes, and hoping to be as good a mom as they are.

Beth

age 36

Virginia

> Hello everyone!! My name is Nancie Bentley. I am 20 years old

and

> live in Belton, Missouri, USA. I just found out today that my

> daughter has Blepharophimosis. Zakiyah is 3 months old. She

> inherited her " small eyes " from her daddy! I really shouldnt say

> that I found out that she had this condition today, It is better

put

> that I found out that her " small eyes " as I call them, acually have

a

> name. My husband also has this and he never knew that there was a

> name for it either!

> I am very happy that I have found this support group because I know

> nothing about the condition, what is can cause, how I can help my

> daughter and husband, or if I can help at all. I have so many

> questions, and most of all I am scared for my daughter because I

dont

> know what this disorder can cause, or how bad it can get, even

though

> she seems perfectly healthy and happy. I really dont have anyone to

> speak to about it either.

> Although my husband has it, his family kept him very sheltered and

> they knew that he had a disorder to cause his small eyes but never

> really looked into it. He doesnt really like to speak about it. It

> makes me upset and I feel bad for him, but I want answers at the

same

> time. All he knows is that the doctors wanted to do surgery when he

> was little and his parents did not agree. Now that we have a

> daughter, he says that she is fine, that I shouldnt take her to the

> doctors because all they will do is want her to have surgery to

make

> her " appearence " better, but I dont know if this is true! Is the

> surgery only cosmetic or is it benefitial to her health? I dont

> know! So many questions and no answers. This is why I need SUPPORT

> for my family, and I need answers!! Anyone that can tell me

> anything, please do, I would appreciate it SOOO much!!

>

>

>

>

>

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