Re: Thanks for the replies

[Guest guest]

Hi

I am 47 years old and the only person in my family with BPES. It

wasn’t till I was 28 that I learnt the name of the condition –

until then I thought I had just “Ptosis”.

I am sorry to hear that you did not get good information

when your son was born. Mr Colin is wonderful, isn’t he? So many members

of this group have been seen by him and his team. I think he retired last year,

but I am not sure. I know that he still has a private practice.

I have not heard about the link with hearing that you mentioned.

I have had skin problems, acne rosacea, but many adults face that issue. I don’t

think there is a link.

For those who are unfamiliar with acne rosacea – here is

some info on it:

cea (roz-ay-sha) is a very

common benign skin disorder that affects many people worldwide. As of 2008, it

is estimated to affect at least 14 million people in the United States alone.

The main symptoms of this facial condition include red or pink patches, visible

broken blood vessels, small red bumps, red cysts,

and pink or irritated eyes. Most people with the disease may not even know they

have rosacea or that it is a diagnosable and treatable condition. Many patients

may just assume they blush easily or have gotten sunburned.

You might like to take a look here to find out more about BPES:

In Google search for BPES

Then when you see the link for BPES Family Network, click

on it. Then on the home page click on the link in the large purple box.

About every 9 months we arrange a get-together for the people

who want to meet up. Last time we had about 11 families represented, over 30

people turned up. Hoping to arrange another in the summer – will post

details.

Regards

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of krnwride

Sent: 05 April 2008 15:50

blepharophimosis

Subject: blepharophimosis Thanks for the replies

Hi again, and thank you and Caroline for

your replies, they have

been most helpful.

Its such a shame that information on bleph is not readily given and we

have had to search for answers. Up until my son was 4 I always believed

it was something I had done wrong to cause this, or that it was due to

the fact he was 7 wks prem, it was only when we were referred to Mr

Colin at Moorfields Eye Hospital that I found out it had a name, and

was a condition, although it was only when his first daughter was born

that we found out it was genetic. Even now, we are still finding out

about other things which may be associated with bleph. At least now my

son and his wife can ask more questions regarding their daughters at

their next appointment, and can try to find out if it is type 1 or 2.

I also heard somewhere a few years back that it can also affect

hearing? I dont know if this may be true or not, and I would be

interested to know if anyone else with bleph has had any skin problems,

as my son has severe psoriasis which only started in his late teens.

Anyway, speak to you all soon.

[Guest guest]

Hi Shereen,

Yes Mr Colin was wonderful, we stopped seeing him when my son was

around 13 as Mrs Lane, who was trained by Mr Colin came to work at

our local hospital, so he was referred to her, although I must admit,

I would have preferred to have continued seeing Mr Colin.

I have been looking at the many photo's on here, and will be showing

my grandaughter later, as she is almost seven and has had a bit of

name calling in school, so I'm sure once she sees these pics she will

feel much better about herself, as she's not alone with this

condition.

It would be lovely when you do have the next meeting if I am able to

come with my son and grandaughters, as although I do not have bleph,

I have obviously been very involved with my son and grandaughters

treatments.

Thanks for your reply, and hope to speak again with you soon.

>

> Hi

>

> I am 47 years old and the only person in my family with BPES. It

wasn't till

> I was 28 that I learnt the name of the condition - until then I

thought I

> had just " Ptosis " .

>

> I am sorry to hear that you did not get good information when your

son was

> born. Mr Colin is wonderful, isn't he? So many members of this

group have

> been seen by him and his team. I think he retired last year, but I

am not

> sure. I know that he still has a private practice.

>

> I have not heard about the link with hearing that you mentioned. I

have had

> skin problems, acne rosacea, but many adults face that issue. I

don't think

> there is a link.

>

>

>

> For those who are unfamiliar with acne rosacea - here is some info

on it:

>

> cea (roz-ay-sha) is a very common benign skin disorder that

affects many

> people worldwide. As of 2008, it is estimated to affect at least 14

million

> people in the United States alone. The main symptoms of this facial

> condition include red or pink patches, visible broken blood

vessels, small

> red bumps, red cysts

> <http://www.medicinenet.com/script/main/art.asp?articlekey=55603> ,

and pink

> or irritated eyes. Most people with the disease may not even know

they have

> rosacea or that it is a diagnosable and treatable condition. Many

patients

> may just assume they blush easily or have gotten sunburned.

>

>

>

> You might like to take a look here to find out more about BPES:

>

>

>

> In Google search for BPES

>

> Then when you see the link for BPES Family Network, click on it.

Then on the

> home page click on the link in the large purple box.

>

>

>

> About every 9 months we arrange a get-together for the people who

want to

> meet up. Last time we had about 11 families represented, over 30

people

> turned up. Hoping to arrange another in the summer - will post

details.

>

> Regards

>

> Shireen Mohandes

>

> London, England

>

>

>

>

>

> From: blepharophimosis

> [mailto:blepharophimosis ] On Behalf Of krnwride

> Sent: 05 April 2008 15:50

> blepharophimosis

> Subject: blepharophimosis Thanks for the replies

>

>

>

> Hi again, and thank you and Caroline for your replies, they

have

> been most helpful.

> Its such a shame that information on bleph is not readily given and

we

> have had to search for answers. Up until my son was 4 I always

believed

> it was something I had done wrong to cause this, or that it was due

to

> the fact he was 7 wks prem, it was only when we were referred to Mr

> Colin at Moorfields Eye Hospital that I found out it had a name,

and

> was a condition, although it was only when his first daughter was

born

> that we found out it was genetic. Even now, we are still finding

out

> about other things which may be associated with bleph. At least now

my

> son and his wife can ask more questions regarding their daughters

at

> their next appointment, and can try to find out if it is type 1 or

2.

> I also heard somewhere a few years back that it can also affect

> hearing? I dont know if this may be true or not, and I would be

> interested to know if anyone else with bleph has had any skin

problems,

> as my son has severe psoriasis which only started in his late teens.

> Anyway, speak to you all soon.

>

>