Re: i have BPES, 15 yr old girl

[Guest guest]

hi Christi. my name is Kim. I have three children who have BPES. Two are my husbands children from a previous marriage and we have a daughter together. His two older with BPES live with their mother. Our daughter together is 6. She has had one surgery at 14 months old to lift her lids. The doctor did a great job. She will have more surgeries but I am looking for a new doctor. We live in Alabama. Can you tell me where your doctor is from and also could you include any pictures you have from before and after your surgeries. I think all our children are beautiful, but I want to do what is in their best interest for the future. My email is kbeaver@.... you can send them directly to me if you don't want to post them. Also, anyone else who can give me some Doctor's who specialize in this would be wonderful. I am so thankful for this group.

Kim Beaver

blepharophimosis i have BPES, 15 yr old girl

hi, my name is christi. i have BPES, it was passed on to me from my dad who got it from his dad. My little sister also has it.i have had 5 surgeries on my eyes. i had my first when i was 3. the doctor i had at that time didnt know what he was talking about and told my mom i wouldn't need anymore surgeries after that, he was wrong. ha I saw a new doctor, a plastic surgeon. His name is dr. Harvey Cole and he is amazing. He is one of the best in the country and he has been called the best in the South. For one of the operations he took tissue from my thigh for the muscle in my eye. (not exactly sure what that did) I also had a surgery where he put wires through my nose to bring the corners of my eyes closer together. Dr. Cole also made artificial creases on my eyes because i didnt really have them before. On August 19, i will be having another surgery to touch everything up. He had said before that i would need another one after my face had developed more. That doesnt mean that its better to wait until you're older because if you wait too long it can affect your vision. Before I had my surgeries, people would ask questions, some would tease, some mothers would even say rude things to my mom. Since my surgeries, i get some questions, but mostly people want to know where im from. They think my eyes are exotic looking and i love that. My eyes are actually one of my favorite things about myself. It can be difficult looking differnt and I cant always do my eye make-up the way i want to, like they have i magazines or on t.v, but i deal and make do with what i have. i hope these can be used as words of encouragement. i would love to hear back from anyone. ;)Christi

[Guest guest]

Hi Kim:

I know of

and Alston CALLAHAN

700 18TH STREET SOUTH BIRMINGHAM, AL 35233

205-933-6888

they have had quite a bit of experience with BPES. I know them

primarily because they have referred patients to me for genetic

research testing. I would be very interested in including your family

in the research. All that is needed is a blood sample which can be sent

through the mail and some documentation of being affected (copies of

medical records, photos etc). For women, a menstrual history and

perhaps a GYN -Endocrine work up is helpful as well. I think that all

affected women with BPES should have a GYN -endocrine work up because

of the chance of pre-mature ovarian failure.

Let me know how I can help.

Kent W. Small, M.D.

Professor of Ophthalmology, UCLA / JSEI

Director, Retina research Lab

Director, Macular Disease Center

200 Stein PLaza

Los Angeles, CA 90095

310-206-7475

fax 310-794-2029

On Saturday, August 9, 2003, at 01:23 PM, Kim Beaver wrote:

> hi Christi.  my name is Kim. I have three children who have BPES.  Two

> are my husbands children from a previous marriage and we have a

> daughter together.  His two older with BPES live with their mother. 

> Our daughter together is 6.  She has had one surgery at 14 months old

> to lift her lids.  The doctor did a great job.  She will have more

> surgeries but I am looking for a new doctor.  We live in Alabama.  Can

> you tell me where your doctor is from and also could you include any

> pictures you have from before and after your surgeries.  I think all

> our children are beautiful, but I want to do what is in their best

> interest for the future.  My email is kbeaver@.... you can

> send them directly to me if you don't want to post them.  Also, anyone

> else who can give me some Doctor's who specialize in this would be

> wonderful.  I am so thankful for this group.

>  

> Kim Beaver

>

> blepharophimosis i have BPES, 15 yr old girl

>

> hi, my name is christi. i have BPES, it was passed on to me from my

> dad who got it from his dad. My little sister also has it.i have had

> 5 surgeries on my eyes. i had my first when i was 3. the doctor i had

> at that time didnt know what he was talking about and told my mom i

> wouldn't need anymore surgeries after that, he was wrong. ha I saw a

> new doctor, a plastic surgeon. His name is dr. Harvey Cole and he is

> amazing. He is one of the best in the country and he has been called

> the best in the South. For one of the operations he took tissue from

> my thigh for the muscle in my eye. (not exactly sure what that did) I

> also had a surgery where he put wires through my nose to bring the

> corners of my eyes closer together. Dr. Cole also made artificial

> creases on my eyes because i didnt really have them before. On August

> 19, i will be having another surgery to touch everything up. He had

> said before that i would need another one after my face had developed

> more. That doesnt mean that its better to wait until you're older

> because if you wait too long it can affect your vision. Before I had

> my surgeries, people would ask questions, some would tease, some

> mothers would even say rude things to my mom. Since my surgeries, i

> get some questions, but mostly people want to know where im from.

> They think my eyes are exotic looking and i love that. My eyes are

> actually one of my favorite things about myself. It can be difficult

> looking differnt and I cant always do my eye make-up the way i want

> to, like they have i magazines or on t.v, but i deal and make do with

> what i have. i hope these can be used as words of encouragement. i

> would love to hear back from anyone.

>

> Christi

>

>

>

>

[Guest guest]

Hi Christi!

I was so excited to read your e-mail. My daughter is 4 months and we will be

visiting Dr. Harvey Cole when she is 6 months for our first visit. He is the Oculoplastic

surgeon in Atlanta, right? I was referred

to him by another plastic surgeon.

I already feel about my daughter like you

do about her eyes. She is

beautiful!! Her eyes make her

unique and right now most people just think her eyes are little. It is wonderful to hear that you love how

your eyes look and I¡Çm sure their distinction makes you striking and

beautiful!! It was great to hear

such a positive outlook.

Thank you for sharing your experience.

I might get back to you with questions

after visiting Dr. Cole if that¡Çs okay!

blepharophimosis i have

BPES, 15 yr old girl

hi, my name is christi. i have BPES, it was passed on

to me from my

dad who got it from his dad. My little sister also

has it.i have had

5 surgeries on my eyes. i had my first when i was

3. the doctor i had

at that time didnt know what he was talking about

and told my mom i

wouldn't need anymore surgeries after that, he was

wrong. ha I saw a

new doctor, a plastic surgeon. His name is dr.

Harvey Cole and he is

amazing. He is one of the best in the country and

he has been called

the best in the South. For one of the operations

he took tissue from

my thigh for the muscle in my eye. (not exactly

sure what that did) I

also had a surgery where he put wires through my

nose to bring the

corners of my eyes closer together. Dr. Cole also

made artificial

creases on my eyes because i didnt really have

them before. On August

19, i will be having another surgery to touch

everything up. He had

said before that i would need another one after my

face had developed

more. That doesnt mean that its better to wait

until you're older

because if you wait too long it can affect your

vision. Before I had

my surgeries, people would ask questions, some

would tease, some

mothers would even say rude things to my mom.

Since my surgeries, i

get some questions, but mostly people want to know

where im from.

They think my eyes are exotic looking and i love

that. My eyes are

actually one of my favorite things about myself.

It can be difficult

looking differnt and I cant always do my eye

make-up the way i want

to, like they have i magazines or on t.v, but i

deal and make do with

what i have. i hope these can be used as words of

encouragement. i

would love to hear back from anyone.

Christi

[Guest guest]

Christi,

It is great to hear from someone with such a great attitude!! I have

a 16 month old daughter with bleph. I hope my daughter grows up to

appreciate her eyes such as you do. We always tell her how beautiful

she is, and how she has the prettiest eyes. Kids can be rude and say

exactly what they feel. I am so afraid for her to start school and

have the kids make fun of her. I want to protect her from all of the

negativity. She has had one surgery at 3 weeks because she wasn't

able to open her eyes except for rare occasions she would " peek " at

us, usually one eye at a time. Her surgeon is from here in Iowa, at

the University Hospital. He also is know as one of the best, here in

the midwest. He will perform another surgery around preschool age.

He said that is when looks start to matter for children and other

children around her will notice a differance. The kids at daycare

don't say anything mean to her or myself. I think the reason why is

because she has been there since 6 weeks and so they have always seen

her with small eyes and know no differant.

I really brightens my day to hear that you are so positive. I too

would like to see some photos of you. I am going to try to post some

of my daughter as well. Thank you so much!!

Dana-Brooklyn's mom!!

> hi, my name is christi. i have BPES, it was passed on to me from my

> dad who got it from his dad. My little sister also has it.i have

had

> 5 surgeries on my eyes. i had my first when i was 3. the doctor i

had

> at that time didnt know what he was talking about and told my mom i

> wouldn't need anymore surgeries after that, he was wrong. ha I saw

a

> new doctor, a plastic surgeon. His name is dr. Harvey Cole and he

is

> amazing. He is one of the best in the country and he has been

called

> the best in the South. For one of the operations he took tissue

from

> my thigh for the muscle in my eye. (not exactly sure what that did)

I

> also had a surgery where he put wires through my nose to bring the

> corners of my eyes closer together. Dr. Cole also made artificial

> creases on my eyes because i didnt really have them before. On

August

> 19, i will be having another surgery to touch everything up. He had

> said before that i would need another one after my face had

developed

> more. That doesnt mean that its better to wait until you're older

> because if you wait too long it can affect your vision. Before I

had

> my surgeries, people would ask questions, some would tease, some

> mothers would even say rude things to my mom. Since my surgeries, i

> get some questions, but mostly people want to know where im from.

> They think my eyes are exotic looking and i love that. My eyes are

> actually one of my favorite things about myself. It can be

difficult

> looking differnt and I cant always do my eye make-up the way i want

> to, like they have i magazines or on t.v, but i deal and make do

with

> what i have. i hope these can be used as words of encouragement. i

> would love to hear back from anyone.

>

> Christi