Blepharophimosis Member Introductions


#81

Steph9766,

There is another site of individuals that have Bleph in their families.
The site is: http://health.groups.yahoo.com/group/blepharophimosis/.
This is another wonderful site. It was the first site that I found
after my daughter was diagnosed.

Nicki Venable

-----Original Message-----
From: Steph9766 [mailto:blepharophimosis-cpt2232@lists.careplace.com]
Sent: Thursday, January 31, 2008 8:38 AM
To: Nicki Venable
Subject: Re: [blepharophimosis] Blepharophimosis Member Introductions


#82

alextoria - well i dont really talk about it anymore but when i was in primary school (3 years ago) some of the older kids asked if i was chinese…& why my eyes were so small & stuff really patronizing like that.
i was surprised when i went into high school in 2006 because i thought i might get some bother but no one has said anything to me about it, all my friends have just accepted it & they dont even realise anymore (:
xox


#83

Avery was able to see by tilting her head…but the Doctor still
performed the surgery as not to hinder her eye sight.
Good Luck!

-----Original Message-----
From: IndieCindy [mailto:blepharophimosis-cpt2232@lists.careplace.com]
Sent: Thursday, January 31, 2008 3:31 PM
To: Nicki Venable
Subject: Re: [blepharophimosis] Blepharophimosis Member Introductions


#84

Please don’t think that it is a rare problem. Almost 50 years ago I married
a wonderful man with what we then called “ptosis” . His two sisters,
father, aunt and uncle had it. We have two sons and one grandson with it.
From my experience, these people are all wonderful, kind, and intelligent.
They are all happy and successful in their lives. I would suggest that your
son have the necessary surgeries (Z plasty and sling procedure) not for the
cosmetic aspect, but to help their vision and posture. Congratulations on
having a special and wonderful son.
----- Original Message -----
From: “Steph9766” blepharophimosis-cpt2232@lists.careplace.com
To: harrisrv@silcon.com
Sent: Thursday, January 31, 2008 5:38 AM
Subject: Re: [blepharophimosis] Blepharophimosis Member Introductions


#85

Hi Cindy,
I agree - after a while we no longer see the difference. Sometimes I notice a stranger looking at Victoria with a ‘curious’ (or is it rude?) expression, and wonder why the heck they are staring at her. Then I remember that she has a different appearance than most people…

That said, I totally agree with you Cindy, “Who wants look like everyone else?”

People also tell Victoria that she looks Chinese. Personally, I feel that is a compliment!

Keep up your great attitude!

IndieCindy blepharophimosis-cpt2232@lists.careplace.com wrote:


#86

Thanks for the responses, so quickly :slight_smile: Our doctor hasn’t advised us to have the sling procedure done (I actually hadn’t heard of that until I visited this site), as he does open his eyes, just not fully. He recognizes faces, is tracking well. We have an appointment with a surgeon at the end of the month. I’m checking out the yahoo site also - thanks!


#87

just read the comment about getting the sling operation.
just to tell you…
my brother got it & it never worked…he ended up with a bad squint & still needing glasses…
BUT…
my dad got the operation too, & he doesnt need glasses & he has 20/20 vision :smiley:
jsut thought i would let you guys kno that!
xox


#88

Thanks, Cindy - that is good to know. I’ve never even heard of this disorder before, much less know anyone who’s ever had it, so my experience is non-existent. So far, my son’s vision seems to be progressing normally (he’s only 2 months). My husband and I both wear glasses/contacts, but none of our children (3 boys - 17 years, 10 years and 2 months old) have ever had anything but perfect vision, thank G-d. Is the sling surgery done when a person is unable to open their eyes at all?


#89

i really have no idea.
but doing some research on the internet would really help (:
good luck xox


#90

Steph -

I have had three successful sling surgeries, one at age 5, 16, and 23 and I
am not 26. My Mom waited until I was a little older for the surgery because
I was able to see and had a little movement in my eyelid muscles but had to
tilt my head back to see. Otherwise i functioned like a normal kid.

The best thing I have done is have the surgeries and I have sought out the
best surgeons.

I am 26 and now a very successful graphic designer and am getting married in
Spring of 09. It’s not a disorder that has ever held me back. My vision
isn’t perfect, I wear glasses, and am being fitted for contacts for the
first time next week. Also, I plan to have lasik in a few years to correct
my vision but with glasses I can get to almost 20/20!

Thx,

J

On Jan 31, 2008 12:29 PM, Steph9766 <
blepharophimosis-cpt2232@lists.careplace.com> wrote:


#91

My daughter Megan is now 20 years old.? She had her first surgery at 7 months.? She didn’t even crack her eyes until she was 10 day old…

But we have never treated her as if she is any different than anyone else.? She is a very outgoing young lady who while in highschool was captain of the cheerleading squad.? She did need glasses but so did our son who does not have blepharophimosis.? She has worn contacts since she was 11, something that totally amazed me as they are so big and her eyes are so small.

The key is to find the best surgeon, one who has done the proceedure countless times before and have realistic expectations.? From the way Megan acted following all of her surgeries (I believe 5 by the time she was 5 years old) I think it always hurt me so much more to see her than it did her.?

Good Luck,

-----Original Message-----
From: Steph9766 blepharophimosis-cpt2232@lists.careplace.com
To: williss318@aol.com
Sent: Fri, 1 Feb 2008 7:08 am
Subject: Re: [blepharophimosis] Blepharophimosis Member Introductions


#92

Hi Steph,

The site confuses me as well. I have a son with bleph and his daughter was
born with it as well. My son’s dad was the first in the family to have the
syndrome. I’m happy to chat if that would help.

My son and his dad both had surgery, my son at 4 and his dad at 3. Our
granddaughter is about to have her first surgery this Tuesday and she is
5. While the techniques are very similar to many years ago, the
technology has improved a great deal.

We are in Seattle. Let me know if there is anything you would like to talk
about.

All the best,

Lexi

On Jan 31, 2008 5:38 AM, Steph9766 <
blepharophimosis-cpt2232@lists.careplace.com> wrote:


#93

Bunnygurl and Lexi - thanks so much for your stories, it’s great to hear from people who have been through it . . .

Your stories sounds very much like how I see my son’s diagnosis, this is good news, not bad . . . a light hiccup in life. I wonder sometimes if I’m in denial or just not seeing the whole picture, not taking this as seriously as it should be taken. But then I look at my son: he’s happy, beautiful and healthy and there are so many very serious conditions in life, this isn’t one of them. Yes, it needs to be monitored and he’ll need surgery in a few years, but this is very manageable.

Plus, this is my third child, I’m 41 years old, and my husband and I have had way too many health issues ourselves that’s we’ve faced and overcome, so I guess my general life experience helps too :slight_smile:

Stephanie


#94

My husband and 2 children have BPES. My husband is 38 and he has 5 out of 10 brothers and sisters that have this also, his dad and grandfather plus several aunts ,uncles and cousins. We live in Kentucky and it is not common where we live only this one family. My husband had 1 surgery at 5 yrs old along with 1 of his sisters. Our son is 12 and he has had 1 surgery at 15 months . Our daughter is 8 and she had 1 surgery at 2 yrs. The dr told us that another surgery was not important it would only be for cosmtic only so we are leaving that up to the kids… if they want that when they get older. My son had to have the first one because if he did not tilt his head back he would bump into everything. I didnt notknow what it was called until yesterday because none of the other family would talk about it and I am guessing that they really did not know either. I have heard that it the kids with this cond.has a mental problem but my children are smart they make straight A in school… I would like to leave more about this.


#95

Hi from Houston. My husband and daughter, born in 2003, have BPES.


#96

wow wow wow…

i just re-found this place!
after reading my first post introducing myself here…i thought i would do it again…because things have changed alot in the past two years! i have found out alot more about myself and my condition…

well, i’m 15 now…i’m taking english, maths, re, pe, pse, italian, biology, drama (my favourite!), administration and media studies in school :slight_smile:

i’m into alternative music, the old punk stuff, the new rock stuff…not really chart music though :slight_smile:

i wear alot of eyeliner, don’t worry…not to cover up my BPES!
it probably does hide it a bit more though…i can post some pics if anyone is curious about how it looks :slight_smile:

i love music, my family, my friends, drama & pete doherty…(it’s a weird obsession of mines!)

i recently fond out somethings about my father…and how he struggled with BPES through his life…basically, my grandmother left him in hospital for 10 months after he was born…refusing to take him home because of his eyes…that really upset me to hear…then i found out that the same grandmother didn’t come to visit me as a child for three years…because of my eyes! noone quite understands it…

i could probably write more…but i don’t want to bore you guys :slight_smile:
anymore questions…i’m happy to answer…
but there is alot of posts from me on the 4th page of this thread xxx


#97

Hey all

Just thought i’d introduce myself,My names lisa and im kayla’s mummy who has been diadnosed with BPES.
I have noticed from alot of the posts on here that quite alot of people and children have needed surgery,i realise everyone may differ,but after seeing picture’s of some on here i look at kayla and think,how lucky she is as far as her eyes go because although they r small and narrow,i dont think they require surgery?
Ive also noticed that alot of people with this condition or parents of children with BPES is 1.been inherited
2.Or in USA area.
I’m in SCOTLAND just wondered if there there anyone on this in the uk?
Im also noticing that alot of adults/kids have normal ability’s and are progressing well in life which is great news!

BUT…Kayla was born may 2007,I didnt expect anything but a healthy little girl…but 24hrs after her birth the weird looks and big words was being fired at me by doctors,I must admit when i 1st seen kayla i thought 2 myself there’s something not right by the way she looked to me,and i felt so bad inside thinking that of my own baby so i kept it 2 myself.
So when the docs started saying things it was like my fears had been confirmed,although i’d gone into defensive mode with the doctors and was like shes only 24hrs old and your picking things with my baby give her a break…!!!
To cut a long story short…it took me a year before i was refered to a genetic specialist…and before that was seen by paediatric doctor,who was useless the best thing he ever did for us was refer us to our genetic doctor!
Ive had a rough time with kayla from birth she came with alot of problems…feeding especially and she has severe developement delay which has been very upsetting for me,never felt so alone in all my life and times are still hard for me but as a mum u have to carry on as kayla relys on me for everything! she will be 2 in may this year and she doesnt speak a word or walk.Kayla sat up by herself this year at 20mth old for 1st time she is on stage 2 jars from end of january this year,before she was on stage 1 so we have made some progress that way,she’s now pulling herself up to stand in her cot which is good!
I love my daughter very much and through all this every day from birth she has always been a happy little girl and melted my heart with her smile and still does :slight_smile:
She does have weird behavior paterns,but then that could be because she cant comunicate with me by talking? its all alot of guess work with kayla.
KAYLA was diagnosed with BPES at 14/15mths old and they fround she has a balance translocation and me and my partner do NOT carry the same pattern as her,or have BPES? Test are still being carried out to look into this mystery further?
i have a son also called owen he will be 5yrs this november and dosnt have anything wrong with him,so its a mystery to us why kayla has it hopefully one day an answer can be found but who knows?

if u can relate plz reply xx lisa xx


#98

im in scotland :slight_smile:


#99

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:


#100

i have bpes and i would never get the surgery why? well becasue ive had it for years i look at it as a unquie thing that most dont have. it is so rare