Blepharophimosis Member Introductions


#61

…ill get back to this part.


#62

Mother of child w bpes


#63

Hello, I am a French young lady of 31 years reached by BPES type 1.
My disease was diagnosed there is less than one year and I underwent 5 days ago my first surgical operation (canthoplasty on both eyes). I shall like obtaining information on the evolution of scars and quite other subjects concerning this disease.
I hope that you will understand my English


#64

MY SON HAS BLEPHAROPHIMOSIS SYNDROME HE IS 4 YRS OLD


#65

Hi I am the mother of a beautiful 3 year old girl with BPES


#66

Hi Nancy,

I have BPES and I am 26 years old. I have had three corrective surgeries and
it was seriously the best thing I could have done. If you would like further
information please feel free to contact me at any time.

Sincerely,

Jamie

On 9/28/07, Zakiyahsmama blepharophimosis-cpt2232@lists.careplace.com
wrote:


#67

Hello Everyone, my name is Nancy. My daughter is 3 months old and has BPES. She gets it from her father who has never had surgery. Until today We never knew that there was a name for the condition, I always just called my daughters eyes little and beautiful. My husband is the first one in his family to have this and was never Officially diagnosed with the condition. I was just looking on the internet and happened to find this information today. The doctors did tell my husband when he was little that he could get the surgery but his parents felt that they did not want to go through with it, and that was the end of it. He doesnt really like to talk about “his eyes” so thats why I am trying to find people to talk to about BPES. My husband and daughter clearly have this, correct me if I am wrong. I have made a doctors appointment for my daughter although my husband does not agree!! He thinks that the surgery is only “cosmetic” and will not be beneficial to her, and I disagree!
I have many questions: Is this condition very common? What are the chances of our other children inheriting this in the future? Is the surgery a complicated procedure, and how long does it take to recover? Is there any other side effect to BPES? I have read that it can cause infertility in females, hearing loss, blindness, and growing disorders, to name a few, but my daughter seems perfectly healthy, just with small eyes!! I know that all of my questions depend of the severity but in general, I just am happy that there are others out there that know what my family is going through and are much more intelligent about the subject than I!! Thanks to everyone that can help me gain knowledge!!


#68

Hi! It is interesting--I often hear of people with BPES who never knew it had a name. (We had never heard of it, no family history.) My daughter had the silastic sling surgery when she was 11 months old. We don't regret it at all. It helps her to open her eyes a bit more, since she uses eyebrow muscles to open them. The doctors thought it was important for us to do it so that her vision developed well. She has no vision problems. It didn't make her eyes appear "normal," but they certainly are normal to us! We have been told that she will probably need the slings replaced or ajusted as she gets older. Also, there are more cosmetic surgeries to consider, but not until she reaches school age. (Rian is 3.) As for the other "issues" that can appear, Rian also has none. Hope this helps a bit. Good luck!

Stacy


From:  Zakiyahsmama
Reply-To:  Zakiyahsmama
To:  ralidak@hotmail.com
Subject:  Re: [blepharophimosis] Blepharophimosis Member Introductions
Date:  Fri, 28 Sep 2007 22:50:52 -0400
>

#69

Dear Nancy,

Thirty-six years ago my second son was born with blepharophimosis (my
first son did not have bleph) though at the time we did not have a
name for it. My son’s father also was born with the same condition
and he was the first in is family to have it. My husband did have
surgery when he was around three and another one sometime later in his
childhood. It did make a big difference. A huge difference.

Our son had his first surgery when he was four. It was an enormous
help since it meant that he could see higher than eye level without
having to lean his head way back. He then had another one when he was
11 though that one did not go as well. Much has changed since then
and the technology is vastly improved. We did not have many resources
at the time even though we were living in a big city and we knew no
one else who had the same problem. Today it’s very different.

My grandaughter was born with the bleph four and a half years ago.
This February she will undergo surgery at Children’s Hospital in
Seattle, Washington. The doctors here are an amazing team and several
of them have been working together to determine when and exactly what
they will do for her. My son and daughter-in-law have been part of
that decision making process. Leah, our grandaughter, is smart and
funny and absolutely gorgeous. But she cannot see above her eye-line
without tilting her head back. You’re right in that one of the
problems for girls with bleph is the possibility of early on-set of
menapause. As far as I know there is no test for that at present. In
the great scheme of things,it’s not so bad.

What we were told when our son was born - and that has been confirmed
since then - is that bleph is a 50/50 possibility. My kids are the
living example of that. My son’s second child was not born with bleph
either. Each time you have a child you have a 50/50 possibility. What
is also true is that if you do not exhibit the condition, you do not
carry the gene for it. So, my first son is not a carrier nor is my
little grandson. Both my second son and my grandaughter are carriers.
Talking to a geneticist was really helpful.

This is not cosmetic surgery, honestly. It is necessary surgery that
will allow your daughter to function more easily. Insurance will pay
for the surgery and they do not pay for cosmetic surgery. Please go
and talk to a doctor. If you are not in a place where you can good
medical help, e-mail me. I’m happy to help get you in contact with
excellent doctors who might be able to put you in touch with medical
help in your area.

I realize that this is a sensitive area for your husband and I would
encourage you to keep on trying. I can’t impress on you enough how
helpful it is to talk to others who are having similar problems.

I wish you good luck. There is a lot of help out there. Sometimes
just talking is helpful.

All the best, Lexi

On 9/28/07, Zakiyahsmama blepharophimosis-cpt2232@lists.careplace.com wrote:


#70

i just found this sight, i am 17 (18 in november) i have Blepharophimosis and some other stuff. i didnt know there was a name, ii just knew i had little eyes. i have the mick taken but i got through it.

i have never met anyone with it although there was a girl in the bed next to me in hospital when i had an op (got no clue what op tho) at like age 3 - 5. i dont know when becasue i just dont remember much about it. i only recently started looking into what i had. my parents never really talked about it to me.

im from exeter, UK


#71

Hi,

My name is Lexi (my real name is Alexa) and I live in Seattle, Washington
in the U.S. I’m so sorry that no one has talked to you about Bleph because
though it’s something that people can see, usually it’s not serious. Most
often it only affects your eyes.

My husband had it and he graduated from Harvard College and became a
lawyer, my second son was born with it and he is a successful business man
living in China, married and with two kids of his own and zillions of
friends. And now my granddaughter has it and will be operated on in
February. She is almost 5 and is absolutely the most delicious child in the
whole world.

I am so glad that you found this sight and hope that you will continue to
talk to people here. There are so many experiences that might be helpful to
you. Start talking to anyone you think might be helpful, go see a doctor on
your own and if that one isn’t helpful, find another one. Sometimes an
opthomologist (eye dr.) can give you more information than a family doctor.
Find someone you really trust and ask for some help. Have you tried talkint
to your parents now? Maybe they would give you more information.

You’re always welcome to write me.

Lexi

On 10/2/07, fusion blepharophimosis-cpt2232@lists.careplace.com wrote:


#72

Hi (sorry I don’t know your name)
I live in London, England and have BPES. I am the only person in my family
with BPES. I am 46 years old and had ops at 2.5, 12 and 18 years.

Here are some good links:
http://freespace.virgin.net/andy.bowles/index_Page338.htm

There is masses of information about BPES. You need to make sure that you
don’t search on “bleph” because that is not a recognised abbreviation.
I noticed from an earlier post that you said you had Blaphorophimosis. Do
you know if you have BPES (where the “B” stands for Blepharophimosis?)

The UK members of the Yahoo Group called “Blepharophimosis” meet up about
once every 10 months. Normally we meet in London, mainly because it is
easier to get to by public transport. The Yahoo Group has about 650 members
worldwide. There are probably about 30 or so members from the UK. There are
some people with BPES in your part of the country, from what I recall.

Take care - and good luck with your research.
Shireen Mohandes
London, England

-----Original Message-----
From: fusion [mailto:blepharophimosis-cpt2232@lists.careplace.com]
Sent: 03 October 2007 17:02
To: shireen@hartsdale.co.uk
Subject: Re: [blepharophimosis] Blepharophimosis Member Introductions


#73

Hi Shireen,

I’m not sure whether the mail below was intended for me. Thought I’d
let you know in case the intended recipient is waiting for a reply
from you.
Hope you are well and hope to see you again one day.

Warmest regards
Michelle

On 04 Oct 2007, at 5:57 AM, Shireen Mohandes wrote:


#74

heeeey (:
im a female & im from scotland,
umm, im 13…& i have blepharophimosis i love having it because NOONE knows what it is…& i like different music…& i have a different style…& wear ALOT of eyeliner so i like having someone thing like this that makes me feel different…but in a really good way!
i have glasses & i have had them since i was about…5 (:
i never knew anything about Blepharophimosis untill i starting researching it & found this site!
its really nice to know other people have children that have it too & that they have it themselves (:
me, my dad & my brother are all the ‘blephs’ in my family :smiley:
xox


#75

Hi

My name is Lucy and my husband and I have a daughter aged 2 who has BPES.
Holly is the first in our family to have BPES. I loved reading your message
and thought how wonderful that you are a very happy, down to earth and
content girl. I hope Holly grows up like you.

There is another BPES group which has a few girls your age who you may want
to write to. Their names are Evie and Emy. We have get-togethers once a
year too in London.

Here is the link to the site;

http://health.groups.yahoo.com/group/blepharophimosis/

Hope to see your messages on there.

Take care

Lucy Chidgey (Gosport, UK)
----- Original Message -----
From: “IndieCindy” blepharophimosis-cpt2232@lists.careplace.com
To: lucy.chidgey@virgin.net
Sent: Wednesday, January 16, 2008 5:59 PM
Subject: Re: [blepharophimosis] Blepharophimosis Member Introductions


#76

aww thanks, i feel so utterly cool now :smiley:
thats so cute how youu have a wee girl with the same…(well i was going to say problem…but its not really a problem is it?!) eye defecty thing…
i was her ALL the best in the future (:
& youu too


#77

Love love love your attitude! You go girl!
Can’t wait to share your post with my 13, who always wants to be 'like everyone else". I always say, "You are like everyone else, only better!"
Don’t ever change Cindy, you rock!

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


#78

just ask her why fit in when she was born to stand out?
everyones different…& last year when i went into high school i wanted to be like the ‘popular kids’ (dont get me started on them :D) but then i just realised that i should be myself & IT ROCKS!


#79

Cindy - Those “popular girls” (I have other names for them as well, but this forum is not a good place for that!) are nothing compared to you. It is obvious that you will go so much further in life than they will! You sound like an amazing teen that your peers should look up to and learn from.

Did you suffer any ridicule as a child growing up with BPES? If so, how did you handle it? For my daughter, that was the worst part of having this syndrome. As her parent, I think it hurt me even more. Things are much better for her now, but I will never forget the hurt that bullies have caused in the past.

Thanks for sharing your wonderful attitude - we can all learn from you!

,

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


#80

My 2-month old son was just diagnosed with Bleph and ptosis, wanted to talk with other families who have kids with this rare disorder. I just found this website and am a little confused by all the choices! Any direction would be very much appreciated!