Re: seeking inforamtion on adult hood and blepharaphimosis

[Guest guest]

Welcome to the group Blake! I wish I could help with adult answers but we have a 14 year old son with BPES and he is the only one in the family. The group is full of fantastic people that collectively have a wealth of information and experiences, I'm sure you will have many responses.

Best Wishes,

The Barrow Family

Ga.

From: blakecooper30 <blakecooper30@...>Subject: blepharophimosis seeking inforamtion on adult hood and blepharaphimosisblepharophimosis Date: Friday, July 10, 2009, 8:00 PM

Hi my name is Blake I am a 21 with bpes. I am the only one in my family with it. I am getting very frustrated with the lack of inforamtion from doctors. I would like to meet other with BPES to see how they have dealt with their lives so far and to see if BPES has effected their adult life or created any difficulties or any healt changes. I am also willing to offer my limited knowledge and support to those who may seek it.

[Guest guest]

Hi Blake

Welcome to our group. There are about 800 or so members –

from all over the world. Like you, I am an adult with BPES, and the only

person in my family who has it. I am 48 years old, and I live in London,

England. You are right – it can be very frustrating getting the

right information from medics – but don’t worry too much –

because there is a lot of good information on the Internet, and I have found

that the way to get more infor/better info is to present your doctor with the

research, in advance of a visit, and say “when I come to see you, I have

some questions to ask you about this”. Don’t forget –

it may take them a while to read up, talk to others and try to learn more about

BPES.

Which country / state do you live in? Also – what type

of information are you seeking – in particular? I can point you to

some very good articles.

Also – many of the members of this site have found

excellent medics, who are well informed and experienced …. I am

sure that we can point you in the right direction.

BPES is very rare, and to be fair, we can’t expect

everyone in the medical profession to know all the very rare syndromes. Nevertheless,

when somebody doesn’t know the answer, it is frustrating.

Take care, and be in touch

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of blakecooper30

Sent: 11 July 2009 01:00

blepharophimosis

Subject: blepharophimosis seeking inforamtion on adult hood and

blepharaphimosis

Hi my name is Blake I am a 21 with bpes. I am

the only one in my family with it. I am getting very frustrated with the lack

of inforamtion from doctors. I would like to meet other with BPES to see how

they have dealt with their lives so far and to see if BPES has effected their

adult life or created any difficulties or any healt changes. I am also willing

to offer my limited knowledge and support to those who may seek it.

[Guest guest]

Hello and Thankyou for your assistance Shireen,

I live in Australia in the state of NSW and am 21 years old. I would like to

know if BPES affects the muscles of the urinary tract system or the bowel. My

mum and I have had very little information on BPES and have only just found out

about the support group.

I am very keen to talk to others who have BPES to see if they have had the same

experiences as me growing up and what are the on going problems related to BPES.

Looking forward to your reply

Blake

>

> Hi Blake

>

> Welcome to our group. There are about 800 or so members - from all over the

> world. Like you, I am an adult with BPES, and the only person in my family

> who has it. I am 48 years old, and I live in London, England. You are

> right - it can be very frustrating getting the right information from medics

> - but don't worry too much - because there is a lot of good information on

> the Internet, and I have found that the way to get more infor/better info is

> to present your doctor with the research, in advance of a visit, and say

> " when I come to see you, I have some questions to ask you about this " .

> Don't forget - it may take them a while to read up, talk to others and try

> to learn more about BPES.

>

> Which country / state do you live in? Also - what type of information are

> you seeking - in particular? I can point you to some very good articles.

>

> Also - many of the members of this site have found excellent medics, who are

> well informed and experienced .. I am sure that we can point you in the

> right direction.

>

> BPES is very rare, and to be fair, we can't expect everyone in the medical

> profession to know all the very rare syndromes. Nevertheless, when

> somebody doesn't know the answer, it is frustrating.

>

> Take care, and be in touch

>

> Shireen Mohandes

>

> London, England

>

>

>

>

>

> From: blepharophimosis

> [mailto:blepharophimosis ] On Behalf Of blakecooper30

> Sent: 11 July 2009 01:00

> blepharophimosis

> Subject: blepharophimosis seeking inforamtion on adult hood and

> blepharaphimosis

>

>

>

>

>

>

>

>

> Hi my name is Blake I am a 21 with bpes. I am the only one in my family with

> it. I am getting very frustrated with the lack of inforamtion from doctors.

> I would like to meet other with BPES to see how they have dealt with their

> lives so far and to see if BPES has effected their adult life or created any

> difficulties or any healt changes. I am also willing to offer my limited

> knowledge and support to those who may seek it.

>