Results Age of Onset of BEB


Posted by Shirley-Arkansas-USA , Apr 09,2001,20:50   Archive
Well, First of all let me say thank you to the people that responded to our little unscientific poll. I now know that I should have asked a few more questions if we really wanted specific data. Many offered much more information than was requested, which is wonderful and very helpful to all of us. Here is what I came up with as far as statistics go. Some I had to approximate and guess a little but like I said, this was not a scientific poll. And if it wasn't written on that post, I didn't use the information, even if I knew it(Delaine).


(1.) 28 people responded:

(2.) Age of onset of symptoms:

1 person said as a teenager
1 person said a long time ago
2 people were 20-26
1 person was age 30
4 age 38-40
8 age 45-49
4 age 50-55
5 age 60-66
2 did not give age of onset

(3.) Age of diagnosis:

1 age-26
4 age 38-40
3 age 41-45
6 age 47-50
3 age 53-55
2 age 57-60
3 age 62-63
2 age 66-70
4 did not give age of Dx.

(4.) Year of onset of symptoms:

1 in 1960's
1 in 1973
1 in 1981
2 in 1991-93
6 in 1994-95
4 in 1996-97
6 in 1998-99
1 in 2000
6 did not offer this information

(5.) Year of Diagnosis:

3 in 1990-91
2 in 1993-94
4 in 1995-96
5 in 1997-98
6 in 1999
4 in 2000
4 did not offer information

(6.) How long did it take you to get diagnosed?

1 in 2 weeks
2 in 2 months
2 in 3-4 months
3 in 5-6 months
2 in 8 months
4 said months (no definite number given)
1 in 1 year
2 in 2 years
2 in 3 years
1 in 5 years
1 in 8 years
7 did not give this information

(7.) Number of doctors seen before diagnosis:

4 people saw 2 doctors
3 people saw 3 doctors
5 people saw 4-5 doctors
2 people saw 7 doctors
1 person saw 10 doctors
1 person saw 12 doctors
12 people didn't offer this information

(8.) Precursors to BEB that were mentioned were:
Stress, dry eyes, divorce, job changes, encephalitis, corneal
surgery, ST and medications.

(9.) Several people mentioned symptoms of squinting, light sensitivity
and blinking as a child.

(10.) Initial symptoms of BEB that were mentioned:

12-- light sensitivity
6-- driving difficulty due to blinking or light sensitivity
5-- squinting
7-- blinking
2-- eye irritation
2-- allergies
7-- dry eyes
3-- eye twitching
3-- eye spasms
1-- breathing difficulty
6-- eyes closing
3-- difficulty reading or watching TV
1-- eye pain


Since different people offered different information, accurate data was impossible to obtain. That would be my fault as I wasn't going for a scientific survey but just asked the question of your age of onset. Still some information can be obtained and is interesting. Some people had symptoms at an early age and then it disappeared, later to return. Others had mild symptoms and didn't pursue things until they dramatically worsened. Bob, I couldn't get an adequate feel for the information that you were asking with the information that was posted. If anyone else wants to have a go at it, feel free.
Next time, tell me to ask more specific questions if you want more specific data, OK? :-)
Hopefully the foundation will be putting out a survey, questionnaire, soon from a doctor that will compile data and maybe we will learn something from this.
Thanks for giving so much of yourself to help others. You're a great lot. Love ya all.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Mon, Apr 09, 2001, 20:57:45

--modified by Shirley-Arkansas-USA at Mon, Apr 09, 2001, 21:01:32

--modified by Shirley-Arkansas-USA at Mon, Apr 09, 2001, 21:11:32




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Re: Results Age of Onset of BEB

Re : Results Age of Onset of BEB --- Shirley-Arkansas-USA
Posted by Mindy , Apr 09,2001,22:04 Top of Thread Archive
Thank you, Shirley,
Excellent Job, girl !!!!!
An important and interesting poll and results.
Big Hugs,
Mindy



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Re: Results Age of Onset of BEB

Re : Results Age of Onset of BEB --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Apr 10,2001,01:08 Top of Thread Archive
Thanks, Shirley, for doing all the compilations - appreciate it.

June in Toronto




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Re: Results Age of Onset of BEB

Re : Results Age of Onset of BEB --- Shirley-Arkansas-USA
Posted by Don Peaslee , Apr 10,2001,10:01 Top of Thread Archive
Shirley, Thanks so much for doing all that work. The results are certainly interesting. I do hope that a larger similar study can be done. Several years ago Dr. Anderson did one but he had the same problem you did. That is, some people didn't answer all questions and some people felt that a simple answer was not enough. As a result, what he had thought was going to be a statistical study turned into a pretty subjective group of observations.



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Re: Results Age of Onset of BEB

Re : Results Age of Onset of BEB --- Shirley-Arkansas-USA
Posted by Delaine Inman , Apr 11,2001,22:04 Top of Thread Archive
With my granddaughter here, life so busy these days and my vision blurred I must confess I must have missed the "survey questions" I just jumped in after reading some of the posts. Sorry Shirley I didn't mean to mess up your data.



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Re: No Survey Questions

Re : Re: Results Age of Onset of BEB --- Delaine Inman
Posted by Shirley-Arkansas-USA , Apr 12,2001,02:48 Top of Thread Archive
Hi Delaine, Glad to see you among the living. Confess all you want but you actually didn't miss any survey questions. It was just a thread that I had started talking about age of onset of BEB. Jumping in is going to get you in trouble, though, one of these days. You didn't mess up any data. It is permissible to skim when your vision is blurred.

Shirley in AR.who knows that there are more than a couple of closet comics out there and they are getting a little ancy.




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Re: Results Age of Onset of BEB

Re : Results Age of Onset of BEB --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Apr 12,2001,00:38 Top of Thread Archive
A+ Shirley!!! Good job. Thanks for taking it on.

Sally




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