RE: New poll for blepharophimosis

[Guest guest]

I am pleased to see that we have a poll, and I would really like to contribute. I think it is great that provides these resources to us.

But I don't really understand the question.

For example, I am 43, have had surgery at 2.5, 12 and 18 years. I know that whilst I had one of the 3 best surgeons in the world operate on me, I know that techniques have improved hugely.

So, the bottom line is that I am happy with my results, for all three operations, given the circumstances.

Shireen

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]Sent: 06 March 2004 08:16blepharophimosis Subject: blepharophimosis New poll for blepharophimosisEnter your vote today! A new poll has been created for the blepharophimosis group:If you have had surgery as an adult, are you happier with the results? o Yes o No o Partially To vote, please visit the following web page:blepharophimosis/surveys?id=1184687 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the web site listed above.Thanks!

[Guest guest]

I can not contribute to the pole. I was not operated on as an adult.

son of Washington

Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

I am pleased to see that we have a poll, and I would really like to contribute. I think it is great that provides these resources to us.

But I don't really understand the question.

For example, I am 43, have had surgery at 2.5, 12 and 18 years. I know that whilst I had one of the 3 best surgeons in the world operate on me, I know that techniques have improved hugely.

So, the bottom line is that I am happy with my results, for all three operations, given the circumstances.

Shireen

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]Sent: 06 March 2004 08:16blepharophimosis Subject: blepharophimosis New poll for blepharophimosisEnter your vote today! A new poll has been created for the blepharophimosis group:If you have had surgery as an adult, are you happier with the results? o Yes o No o Partially To vote, please visit the following web page:blepharophimosis/surveys?id=1184687 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the web site listed

above.Thanks!

[Guest guest]

I guess my questions is this:

The surgery I had as an infant or child was about 99.9%

forgotten/unremembered. I was under the care of my parents, and i

didn't have to come up with the money myself, and i didn't have to

take off weeks from work, and i basically had less reality to deal

with as a very small child.

as such, i see adult surgery personally as a major dream, but not

very practical for me right now.

i am wondering if others who have had the surgery as more cognizant

adults (18-99 years old) were happy with the results/was it worth the

time, effort, and money?

best,

april

> I am pleased to see that we have a poll, and I would really like to

> contribute. I think it is great that provides these

resources to us.

> But I don't really understand the question.

> For example, I am 43, have had surgery at 2.5, 12 and 18 years. I

know that

> whilst I had one of the 3 best surgeons in the world operate on me,

I know

> that techniques have improved hugely.

> So, the bottom line is that I am happy with my results, for all

three

> operations, given the circumstances.

> Shireen

> blepharophimosis New poll for blepharophimosis

>

>

>

> Enter your vote today! A new poll has been created for the

> blepharophimosis group:

>

> If you have had surgery as an adult,

> are you happier with the results?

>

> o Yes

> o No

> o Partially

>

>

> To vote, please visit the following web page:

>

> blepharophimosis/surveys?id=1184687

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the

> web site listed above.

>

> Thanks!

[Guest guest]

--- can we add a bit to the poll if we have things that we were told

about our child that had anything to do with BPES?? for example i

see you have that the head is smaller than average and i was told

that in because of his (lynden's) BPES his head is bigger than

average

thanks again

tonikka and lynden

In blepharophimosis ,

blepharophimosis wrote:

>

>

> Enter your vote today! A new poll has been created for the

> blepharophimosis group:

>

> Do the people in your family with BPES

> exhibit any of the following

> conditions? If you have more than one

> person in the family with BPES, pls

> feel free to take this survey one time

> for each person.

> (please check all that apply);

>

> o Developmental delay

> o Ear malformation

> o Mental retardation

> o Underdeveloped bridge of nose

> o Facial deformity

> o Near/farsightedness

> o Microcephaly (head is smaller than average)

> o Amblyopia (lazy eye)

> o Tear duct problems (poor drainage)

> o Eczema

> o Sensory impairment (problems with

sight/smell/hearing/touch/taste)

> o Underdeveloped musculature

> o ADD (Attention Deficit Disorder)

> o No other issues, save ptosis (drooping eyelids)

> o Other

>

>

> To vote, please visit the following web page:

> blepharophimosis/surveys?id=1505163

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the

> web site listed above.

>

> Thanks!

[Guest guest]

Sadly, we will have to stick with the poll as it is. We have 35 votes

already, and if we change the poll at all, the system will wipe out all

previous results.

If possible, please simply tick 'other' for categories that do not fit

within the existing framework.

Should people wish to do an online survey with a bit more depth in the

future, I would be happy to oblige. We should probably not do it on the

network, as the polling system they have is fairly rudimentary. I

can create and host the survey through my company if people are

interested - one of the advantages to working in an online focused

market research company...

Best, Micah

blepharophimosis Re: New poll for blepharophimosis

--- can we add a bit to the poll if we have things that we were told

about our child that had anything to do with BPES?? for example i

see you have that the head is smaller than average and i was told

that in because of his (lynden's) BPES his head is bigger than

average

thanks again

tonikka and lynden

In blepharophimosis ,

blepharophimosis wrote:

>

>

> Enter your vote today! A new poll has been created for the

> blepharophimosis group:

>

> Do the people in your family with BPES

> exhibit any of the following

> conditions? If you have more than one

> person in the family with BPES, pls

> feel free to take this survey one time

> for each person.

> (please check all that apply);

>

> o Developmental delay

> o Ear malformation

> o Mental retardation

> o Underdeveloped bridge of nose

> o Facial deformity

> o Near/farsightedness

> o Microcephaly (head is smaller than average)

> o Amblyopia (lazy eye)

> o Tear duct problems (poor drainage)

> o Eczema

> o Sensory impairment (problems with

sight/smell/hearing/touch/taste)

> o Underdeveloped musculature

> o ADD (Attention Deficit Disorder)

> o No other issues, save ptosis (drooping eyelids)

> o Other

>

>

> To vote, please visit the following web page:

> blepharophimosis/surveys?id=1505163

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the

> web site listed above.

>

> Thanks!