Question


Posted by Cherie Hanscom , Mar 20,2001,14:04   Archive
Hi everyone! I haven't posted on the board for quite some time. I have spent today reading over the other posts, and I have to say GOD bless all of you! It is my mother that has blepharospasm. At this time, she is still taking botox injections and her doctor is trying her on different oral meds, which seem to be helping some what. She goes back tomorrow for another botox injection. She is only able to go about two months between treatments. She like the rest of you have good and bad days.

Let me get to my question--I am in college and I an doing an Informative Speech, and I decided on Blepharospasm for my topic. I think more people need to know about this disease. I have been all over the internet searching for information, and I have found quite a bit. I know this is a rare disease, and what I still need to find out is, about how many people have blepharospasm (either in the U.S. or world wide). Even if it is just a close guess will help alot.

Thank you in advance...Cherie




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Re: Question

Re : Question --- Cherie Hanscom
Posted by Virginia , Mar 20,2001,14:24 Top of Thread Archive
Your best chance of finding accurate answers is to contact the BEBRF. Contact info is below:

Benign Essential Research Foundation
P.O. Box 12468
Beaumont, TX
USA 77726-2468
Tel: (409) 832-0788
Fax: (409) 832-0890
E-mail: bebrf@ih2000.net




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Re: Question

Re : Re: Question --- Virginia
Posted by Cherie Hanscom , Mar 20,2001,14:56 Top of Thread Archive
Thanks Virginia!



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Re: Question

Re : Question --- Cherie Hanscom
Posted by Sally - in - Idaho , Mar 20,2001,15:03 Top of Thread Archive
Bless you, bless you, dear Cherie! How wonderful tht a young person such as yourself would "care enough to send the very best" (that Hallmark logo just popped in) but it fits in that you care enough to send out information and help get your mother's disease publicized.

Did you know that blepharospasm is quite often hereditary? You may be helping yourself out in the future by making people more aware and more willing to support research. My mother had it in the 60s and 70s and we knew nothing about the possibility of it being hereditary. When I began having symptoms, all the doctors scoffed at the idea that I could have this very rare disease that is NEVER hereditary. Wrong. The first neurologist I saw took one look at me, heard about my mother, and handed me a pamphlet underlining the statement that it often is seen in families. One of my sons has been told that he has the possibility of developing it also because of a longterm tic in one eye. I pray this does not happen.

I was going to give you the same suggestion that you got from Virginia. The foundation can give you lots of help in plain language. Please let us know how your report goes. Maybe you can even print it for us to read.

Good luck and thank you for all you are trying to do!

Sally in North Idaho




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Re: Question

Re : Re: Question --- Sally - in - Idaho
Posted by Cherie Hanscom , Mar 20,2001,17:35 Top of Thread Archive
Sally, I'm not so young (35)LOL!! I have heard that it may be
hereditary. I am having problems with my eyes running water 24
hours a day and staying red. Everybody keeps asking me why I'm
always crying. My doctor says it's allergys but allergy meds. have
no effect on them. Some days everything looks smoky or hazy. I don't
know if this is an early warning of blepharospasm. Most people say
their eyes are very dryand that it doesn't start until people are
in their 50's or 60's. I'm terrified to go to an eye doctor, I
shouldn't be though. Just afraid of what he might say I guess. Heck I
may just need glasses!
I wrote to the address that Patrica sent to me. I am waiting for a
reply. I will let y'all know what I find out.
Cherie



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Re : Re: Question --- Cherie Hanscom
Posted by Christel-California , Mar 20,2001,18:37 Top of Thread Archive
Cherie, my eyes were running constantly also before all the symptoms set in. I have the problem seldom now, but have never suffered from dry eyes, as so many of my fellow sufferers. I do hope there is a simpler reason for your runny eyes.
Good luck to you and thank you for being instrumental in making our condition better known.
Christel



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Re : Re: Question --- Cherie Hanscom
Posted by Delaine Inman , Mar 21,2001,17:51 Top of Thread Archive
As hard as it is to believe, watering eyes is a symptom of dry eyes! Mine started out with blinking and watering eyes in the car. My eye make-up washed down in streaks on my face by the time I got to work. Though old literature says it happens mainly in women around 56 years old, sadly that age seems to be dropping more often. I was 48 when I was diagnosed. Kelly was about 26. It happens at any age, to men and women, to dark eyes and light eyes and every skin color....in other words it respects or discriminates against no one. It does occur in families. And it is not as rare as it use to be or we are just knowing what to call it now.



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Re : Question --- Cherie Hanscom
Posted by Dee in OR (Dee L.,Dee in OR), Mar 20,2001,20:18 Top of Thread Archive
Hi Cherie,

I also want to thank you for being interested enough in blephs to do a report on it. That is greta. And I ditto what Virginia said - contact the BEBRF for the best info. Also, I'd love to read your report when you finish it. Would you mind sharing it? No critiquing, I promise!!

Dee in OR




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Re: Question

Re : Question --- Cherie Hanscom
Posted by Kelly Saffell , Mar 21,2001,09:36 Top of Thread Archive
Thanks so much for your interest!! I just read on the BB that the estimated number of people with blepharospasm is 60-80,000 which makes it a rare disease. My grandmother has BEB and so did 2 of her siblings. I have had it for almost 6 years and am 32 years old. I don't remember my eyes tearing alot in the beginning but I, too, have horrible allergies so I may not have noticed. My beginning symptom was that my eyelids felt so heavy that I couldn't hold them open. I would love to read your paper when you finish!



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Re : Re: Question --- Kelly Saffell
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 21,2001,09:57 Top of Thread Archive
I also had excessive tearing before BEB symptoms took over. Usually it would happen in the car. I have no idea why. My eyes would just stream with tears for 2-3 hours. Since meds and botox, this has not happened.



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Re: Tears

Re : Re: Question --- Joanne Johnson
Posted by June in Toronto (June Floyd,June in Toronto), Mar 21,2001,12:55 Top of Thread Archive
I have those `unsatisfactory' tears (there are 2 types of tears) usually after botox for a week or so. Unfortunately they do not moisturize the eyes - just run down the face and cause sensitive skin from all the mopping up! I still have to use creams/drops to keep my eyes moist - strange!

June in Toronto




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