Re: Re: wanting to meet and talk to a female adult with ptosis

[Guest guest]

Hi Janice,

I don't have BPES but my daughter does. She is now 13 and has had to deal with

kids teasing her and telling her she has weird eyes. She wears glasses and this

covers some of the scaring. She also has thick scar tissue and this has caused

her scars to be worse. She has been receiving counseling for about 3 years and

she is on medication for social and generalized anxiety. This seems to have

helped her. She is such a caring person and could never imagine hurting someone

elses feelings. She has already made the decision not to have any children

because she knows that she could pass this eye disorder onto her children. So,

she is already making plans to adopt a child. As of right now she doesn't have

premature ovarian failure but from what I am told that sometimes it doesn't show

up until later when she is older. Janice like you we have not met another

person that has BPES but I think Hannah would love to meet someone with BPES. I

have had to deal with BPES as a mom and somedays it is very difficult to know

that others kids don't like your child because they are different. I have been

on top of this with the school and they have been very supportive of my

complaints. I hope this group makes you realize that you aren't alone and there

are many different people with this eye disorder. If you care to chat with me I

am up for it even though I don't have BPES.

Sincerely

(New Hampshire)

>From: Janice Eddy <jlelpn03@...>

>Date: 2007/05/13 Sun AM 03:59:39 CDT

>blepharophimosis

>Subject: Re: blepharophimosis wanting to meet and talk to a female adult with

ptosis

>

>I am from Indiana, I'm 47 and and like you have had to learn to live with this.

I used to think kids where cruel just because they didn't know better. Now as an

adult, I know those kids have learned how to be so cruel at home. I have had 3

surgeries in Indianapolis and they have helped but I'm still different. I also

can not have children because of this. Thank God my husband understood. I used

to pray at night to let me wake up and be like everyone else. I hate going to

new places, I don't really like meeting new people but I make myself get up

everyday because I refuse to let them win. In some ways I feel I am a better

person because of this. I don't make fun of people, and I help people as much as

possible. I am more than willing to talk to you about this if you wish. Janice

>

>extraordinair12 <extraordinair12@...> wrote: I know the pain of

living with this disorder.I've had two different <BR>surgeries and still my

eyelids droop but not as much as before the <BR>surgeries.I have somewhat

learned to live with it over the years.Of <BR>course there is allways some cruel

person to remind me that i am <BR>different. This condition must be rare,

haven't met anyone who has

>it.If you have this I want to talk with you.

>

>

>

> Get the free toolbar and rest assured with the added security of

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[Guest guest]

, I had periods starting at 13 and always thought I would have children, then when I was about 21- 22 I started having problems. I had premature menopause at 25-26. It was REALLY rough. I didn't know what was happening to me until my Dr. told me. I too wear glasses and I don't like anyone to see me with them off. Silly, I know but they feel like a shield. I wish I could take all of your daughters pain away but it sounds like you are doing a good job of taking care of her. My family never talked about the fact that the last 4 of us where so different. I was the one that went to the Dr in Indy, after I had my surgeries both of my sisters had theirs. I have discovered the more I talk about BPES it doesn't seem like such a big monster, course it has taken 47 years to get here and I still have bad days. I have a brother who has BPES and he has a son who has BPES also. My nephew had 2 children both girls and neither one had BPES

but they had 2 more children both boys and they both have BPES. I think there are alot more of us out there than we think. I keep wishing Oprah would do a show about this disorder, maybe then more people would realize that we are just like them. I know this is long and I'm sorry. Please email again. Thank You Janice <c.jameson@...> wrote: Hi Janice,I don't have BPES but my daughter does. She is now 13 and has had to deal with kids teasing her and telling her she has weird eyes. She wears glasses

and this covers some of the scaring. She also has thick scar tissue and this has caused her scars to be worse. She has been receiving counseling for about 3 years and she is on medication for social and generalized anxiety. This seems to have helped her. She is such a caring person and could never imagine hurting someone elses feelings. She has already made the decision not to have any children because she knows that she could pass this eye disorder onto her children. So, she is already making plans to adopt a child. As of right now she doesn't have premature ovarian failure but from what I am told that sometimes it doesn't show up until later when she is older. Janice like you we have not met another person that has BPES but I think Hannah would love to meet someone with BPES. I have had to deal with BPES as a mom and somedays it is very difficult to know that others kids don't like your child because they are different. I have been on top of this with the school and they

have been very supportive of my complaints. I hope this group makes you realize that you aren't alone and there are many different people with this eye disorder. If you care to chat with me I am up for it even though I don't have BPES.Sincerely (New Hampshire)>From: Janice Eddy <jlelpn03 >>Date: 2007/05/13 Sun AM 03:59:39 CDT>blepharophimosis >Subject: Re: blepharophimosis wanting to meet and talk to a female adult with ptosis> >I am from Indiana, I'm 47 and and like you have had to learn to live with this. I used to think kids where cruel just because they didn't know better. Now as an adult, I know those kids have learned how to be so cruel at home. I have had 3 surgeries in Indianapolis and they have helped but I'm still different. I also can not have

children because of this. Thank God my husband understood. I used to pray at night to let me wake up and be like everyone else. I hate going to new places, I don't really like meeting new people but I make myself get up everyday because I refuse to let them win. In some ways I feel I am a better person because of this. I don't make fun of people, and I help people as much as possible. I am more than willing to talk to you about this if you wish. Janice>>extraordinair12 <extraordinair12 > wrote: I know the pain of living with this disorder.I've had two different <BR>surgeries and still my eyelids droop but not as much as before the <BR>surgeries.I have somewhat learned to live with it over the years.Of <BR>course there is allways some cruel person to remind me that i am <BR>different. This condition must be rare, haven't met anyone who has >it.If you have

this I want to talk with you.>>>> Get the free toolbar and rest assured with the added security of spyware protection.

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