Blepharophimosis Member Introductions


#101

Hello, this is Sally from Australia. I am 48 and have BPES and so do my two sons aged 8 & 15. My BPES was spontaneous, no one else in my family had it, and I have 2 younger brothers who don’t, nor do their children, but I have passed it on to my sons. We have all had operations, as our bleph is severe, we could only open our eyes a few millimeters and so would have very limited vision without ops. I have had 4, three when I was a child, but the most recent was 14 years ago. This was mainly cosmetic, it gave me a nice eyelid “crease” making my eyes look more normal, also after last op, I could finally close my eyes a lot better. Because of my eye condition, I had self esteem and confidance issues, but my boys don’t seem to be at all bothered by this, they are both out going and confidant and have plenty of friends. My last op helped me feel better and more normal, maybe it was just because I’m a girl that I had more problems. All 3 of us are longsighted and need to wear glasses. Apart from that, we are all okay both physically and intellectually with normal development. I found a very experienced surgeon who did my kids ops and also my last one, and am very happy with the results. If there are any other people or families with bleph in Australia, particularly near Sunshine Coast Queensland, I would love to meet you, or just communicate, and I can share my experiences and recommend my Doctor if interested.


#102

47 years old. I am articulate, beautiful, kind, and giving, yet I experienced severe abuse from infancy to today. The abuse springs from microexpressions and expressions that are non-standard. Oddly, no one percieves the non-standard expressions, they think I look the same as anyone else. But they often unconsciously mis-mirror my face and mis-interpret my emotions (which HURTS my head) and this causes a negative feedback loop of suspicion and anger.

I believe my surgery, performed at two, was either (completely unnecesary) or (far too young.) Why…?

What is NOT DOCUMENTED IN THE RESEARCH LITERATURE is that other facial muscles, including the tongue and shoulder and lung tissue, grow upwards to assist in opening and closing the eyelids. At my age, suddenly I realized my eyelids and eyes and face have a huge range of motion not possible due to that one muscle slapped in my forehead, at two.

The standard muscle/sling surgery and Z-plasty opened my eyes up, but only provided one upward-eyelid motion, while the eyelid had to just drift downward to close. This caused infant-me to roll the eyes back in the eye socket to sleep, or to blink. These eye-rolls still happen and cause such dreadful microexpressions that they turn people, even nice people, into abusive assholes!

So, I’m on a quest to document scientifically the true healing process of BPES, come up with a solid plan to help the bullied children, and also prevent adult and elder abuse that is the traumatic life-long gift of a BPES condition like mine.

However, sounds like many of you are lucky, and don’t have a “horror show face” that appears perfectly normal, but makes people upset. I’d love to know whether that’s due to your age when you got a surgery, or due to the fact that all our faces “grow” to move the eyelids in a different way, and mine just did this.

Join me. Facebook: Blepharophimosis Ptosis.

Renee


#103

Why Renee, not Wendy? Wendy like in Peter Pan, that was Stephanie’s storybook…we read that together as kids, so I recommend the book! It’s about a mother/sister, and her brothers, who could fly!


#104

Hello my name is Nicki. I have a 4 yr old with Bleph. She has had surgery and her eyes are incredibly beautiful. Not that they were not before, but I can now see all of the pretty brown of her eyes. She is very intelligent. She had surgery at the Riley Childrens Hospital in Indianapolis, IN (Dr. David Plager).


#105

I am going on a road trip, and wish to meet with other people with BPES, I’ll be passing through Boulder City(Nevada), Oklahoma, Kentucky, and various stops along the way.

By the way, teaching a class of “Hula-Hooping” for sixty children with special needs. I am teaching six classes of about ten each, and guess what?!

I am bringing my hoop-hoopios on the road trip, and teaching all y’all to spin. Waists and tummies…get ready to meet your friend, the hoop! So please drop me a message if you want to provide a stop on my road trip.

Hugs, REnee


#106

Hi LisaP4.

Your sweet daughter's delay in eating and talking: can she signal with hand gestures? Children catch up, no matter how late they talk, as long as the are communicating with hand gestures. Don't worry.

BPES condition is NOT WELL EXPLORED. Don't rely on what you find online, they say "get this surgery" and no more. The truth is more interesting.

At this very moment, other facial muscles, including the back of the tongue, grow (they 'relocate') to help the eyelids move. This is not documented anywere in the medical literature, but I am currently fixing that. Kayla is just learning to move her eyes, she'll talk after awhile, don't you worry.


Use her hand gestures, and make "conversations" by pointing and laughing!

Please remember these things:

(*) She cannot show fear in the normal way; her fear-faces can look exactly like a happy grin; this led to huge misunderstandings and abuse from my own morally-decent mother.

(*) She cannot show pain in the normal way; her pained/hurt face doesn't match standard charts, and many childhood injuries go untreated due to this.

(*) Kayla cannot even show "I am sincere" in the normal way; we lack "sincere smile muscles" which make all kinds of trouble with authority figures including caregivers!

Please get some friend to help, my love; I live in California so I'm too far away. If you would like to telephone or email me, please do:


USA (phone) five one zero, two nine five, three two two three; 1209 Mariposa Avenue, 95126. My email is goddess (at) "the last word at the end of this letter"

Best wishes,
Renee

oort.com



#107

Hi LisaP4.

Your sweet daughter's delay in eating and talking: can she
signal with hand gestures? Children catch up, no matter how late they
talk, as long as the are communicating with hand gestures. Don't worry.

BPES condition is NOT WELL EXPLORED. Don't rely on what you find

online, they say "get this surgery" and no more. The truth is more interesting.

At this very moment, other facial

muscles, including the back of the tongue, grow (they 'relocate') to help the eyelids move. This is

not documented anywere in the medical literature, but I am currently

fixing that. Kayla is just learning to move her eyes, she'll talk after awhile, don't you worry.


Use her hand gestures, and make "conversations" by pointing and laughing!

Please remember these things:

(*) She cannot show fear in the normal way; her fear-faces can
look exactly like a happy grin; this led to huge misunderstandings and
abuse

from my own morally-decent mother.

(*) She cannot show pain in the normal way; her pained/hurt face doesn't match standard charts, and many childhood injuries go

untreated due to this.

(*) Kayla cannot even show "I am sincere" in the normal way; we lack "sincere

smile muscles" which make all kinds of trouble with authority figures

including caregivers!

Please get some friend to help, my love; I live in California so I'm

too far away. If you would like to telephone or email me, please do:


Renee / find me online



#108

Hi LisaP4.

Your sweet daughter's delay in eating and talking: can she signal with hand gestures? Children catch up, no matter how late they talk, as long as the are communicating with hand gestures. Don't worry.

BPES condition is NOT WELL EXPLORED. Don't rely on what you find
online, they say "get this surgery" and no more. The truth is more interesting.

At this very moment, other facial
muscles, including the back of the tongue, grow (they 'relocate') to help the eyelids move. This is
not documented anywere in the medical literature, but I am currently
fixing that. Kayla is just learning to move her eyes, she'll talk after awhile, don't you worry.


Use her hand gestures, and make "conversations" by pointing and laughing!

Please remember these things:

(*) She cannot show fear in the normal way; her fear-faces can look exactly like a happy grin; this led to huge misunderstandings and abuse
from my own morally-decent mother.

(*) She cannot show pain in the normal way; her pained/hurt face doesn't match standard charts, and many childhood injuries go
untreated due to this.

(*) Kayla cannot even show "I am sincere" in the normal way; we lack "sincere
smile muscles" which make all kinds of trouble with authority figures
including caregivers!

Please get some friend to help, my love; I live in California so I'm
too far away. If you would like to telephone or email me, please do:


USA (phone) four oh eight, nine nine eight, nine eight nine nine.

Best wishes,

Renee / oort


#109

Hi Guys I’s so glad i found this site … after ages of searching !
We live in the UK. My 5 Year old daughter is on the waiting list for correction of her epicanthus inverses H- telecanthus with ptosis by brow suspention.



She also has poor belles phenomenon which is an abnormally low position of the upper eyelid,

she also has a fine occasional horizontal nystagmus in the left eye which is a condition of involuntary eye movement which could be the cause of her reduced

vision.

She also has a small esotropia which is a form of strabismus, or “squint”, in which one eye turns inward.

She also had a CT Orbits scan today .We have also been

told that this eye problem can cause her to be infertile when she is older.

Hoping to share experiences and advice regarding surgery - non surgery ect.
Lea


#110

Hi,
My husband and son both have BPES. Husband never had an op as it was not recognised/diagnosed as a syndrome, but son had the op when he was 7yrs old (only the eyelid lift as his nose would grow and therefore narrow the nasal bridge). Best thing we did was have the op as he was struggling to sit on the floor and look up at the teacher during mat time etc - getting sore neck from having to lift his head higher than normal.