Poll Results and Analysis

[Guest guest]

Hi All,

Here are the preliminary results from the poll. The survey will end at the end of the

month, but I think there will not be too many more respondents. Below is the raw data, with a quick

analysis. The percentages depict

the total proportion of BPES carriers who participated in the survey, who

possess a given trait.

Condition

#

of Respondents

Percentage

Ptosis (drooping eyelids)

27

100%

Near/farsightedness

19

70%

Underdeveloped bridge of nose

17

63%

Tear duct problems

13

48%

Amblyopia (lazy

eye)

10

37%

Other

9

33%

Ear malformation

8

30%

Developmental delay

6

22%

Eczema

5

19%

ADD (Attention Deficit Disorder)

4

15%

Mental retardation

4

15%

Facial deformity

3

11%

Underdeveloped musculature

3

11%

Sensory impairment

2

7%

Microcephaly (head is smaller than average)

1

4%

1) I am

assuming that all people surveyed had ptosis, as (I believe) this is the

primary defining trait of BPES. This

means 27 people to date have taken the survey.

2) 70% surveyed

have issues with vision. This is

somewhat higher than the average of 61% listed for people in the U.S. who buy

corrective lenses (http://www.allaboutvision.com/resources/statistics-eyewear.htm).

3) 63% of

respondents said that they have an undeveloped nose bridge. I would be curious to know how many of these

people needed surgery to correct this.

My doctor told me that both my daughter and I

have this problem, but that it does not require surgery, nor is it

noticeable. Not sure if this is the

same for others in the group.

4) 48% have

tear duct issues. Again, this an issue I have heard about quite a bit, and it looks

like a number of us have this.

5) There a

number of issues that are also quite common – between the 22% - 37%

range. Amblyopia,

ear malformation, and developmental delay.

This to some degree answers some of the earlier questions asked by

members about developmental delay, and ear malformation. These all look quite common,

unfortunately.

6) At the 10 - 20%

level, there are also a number of fairly prevalent issues (eczema, ADD, mental

retardation, and underdeveloped musculature.) All of these were news to me – I didn’t

know that these were as significant as they were.

7) Unfortunately,

the ‘Other’ category is not overly helpful, as we were not able to

list out what exactly these other issues were. Maybe we can take this on if we ever do a

more in depth survey.

The biggest problem with this survey at this point is sample

size. Ideally, it would be best to

have at least 300 people take the survey, which would allow an accuracy rate of

about +/-5%. That would be quite

difficult to do, of course, given the number of people

in our group.

Anyway, I hope that this is of help for those of us trying

to understand how common the various issues we all have are, in addition to

ptosis.

Best, Micah