Peter Jennings and Botox


Posted by Rita Molnar , Feb 16,2002,21:51   Archive
Just like most of us, I get a little "miffed" when I hear anyone on TV speak of Botox as a wonder drug for all those horrid wrinkles...while Botox means so much to me. But as I thought about it, I realized that what bothers me most is realizing how many other people are out there with this BEB problem--not knowing what to do or where to go.

So, I thought I'd try my luck at having him "hear" us. Let me share my comments with you folks...maybe you'd like to follow up to World News Tonight, with Peter Jennings, and send him a comment, as well.

TO: Peter Jennings
RE: BOTOX INJECTIONS

On January 11th, I received my Botox injections...I had 9 shots around each eye, and about 4 days later, I was the happiest woman on earth, because I WAS ABLE TO SEE AGAIN.

I HAVE A NEUROLOGICAL CONDITION CALLED BENIGN ESSENTIAL BLEPHAROSPASM (BEB).

The effects of my 18 shots will last, I expect, until the end of March, and after that, for the next 2 weeks or so, I expect to be blind again, until my next shots, scheduled for April 16th. I'm one of the luckier ones, Peter, many are even less fortunate than me.

THERE IS NO CURE FOR BEB...and not much in the way of treatment for relief...EXCEPT FOR BOTOX. If I want to see at all, I MUST take these shots for the rest of my life, or until a cure can be found.

It took me nearly 10 years to finally get a diagnosis, and I feel so sorry for others who suffer from this neurological disorder, and don't know what it is,or don't know where to go for help. So, everytime I hear someone on TV speak of Botox in relationship to "wrinkle lines", I want to scream...."PLEASE...Tell them about Blepharospasm...and how Botox can help people who suffer from it.

What a public service you can do, Peter, to mention this disorder and the effects of botox on it. You can learn all you wouldlike to know about BEB on the Foundations's Web site, http://www.blepharospasm.org/.

Thanks for any help you can give us, Peter.




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Re: Peter Jennings and Botox

Re : Peter Jennings and Botox --- Rita Molnar
Posted by Joanne Matuzas , Feb 17,2002,00:18 Top of Thread Archive
Rita, thanks for the post and sharing the letter to Peter Jennings.
I share your thought about publicizing BEB so that others with this
disorder can get a diagnosis and help more quickly than most of us
have in the past. Now that BOTOX is becoming a household word, we need
to push harder than ever to get BEB info out there. I will do a follow up letter to Jennings as well. How about it fellow blephros?
Joanne M. San Diego, CA



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Re: Peter Jennings and Botox

Re : Peter Jennings and Botox --- Rita Molnar
Posted by kathy , Feb 17,2002,03:45 Top of Thread Archive
I am so proud of you,Rita!! how do you get in touch with him again?, thru the beb link?



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Re: Peter Jennings and Botox/EMAIL ADDRESS

Re : Peter Jennings and Botox --- Rita Molnar
Posted by Rita Molnar , Feb 17,2002,11:30 Top of Thread Archive
SO SORRY, GUYS....in my excitement to get a note out to him, I neglected to share the address in case any of you wanted to add to my comments. Here it is:

http://abcnews.go.com

When you get there, look in the left hand blue margin for "contact abc".
From that page, click on "World News Tonight". (sorry I couldn't get you directly to the page...but they wouldn't let me.


Things seem to be looking up a little on this issue, though. I heard on ABC News this morning that they are going to do a short piece at 5PM this evening (EST) on the use of Botox for back pain..... Maybe they're beginning to hear us?

Rita in New Jersey

--modified by Rita Molnar at Sun, Feb 17, 2002, 11:43:20




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Re: Peter Jennings and Botox/EMAIL ADDRESS

Re : Re: Peter Jennings and Botox/EMAIL ADDRESS --- Rita Molnar
Posted by kathy , Feb 18,2002,03:39 Top of Thread Archive
thanks, Rita. I sent him my comments as i couldn't find the e-mail place.



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Re: Peter Jennings and Botox

Re : Peter Jennings and Botox --- Rita Molnar
Posted by MaryNY , Feb 17,2002,14:24 Top of Thread Archive
Rita --Good letter ! I sent mine to 20/20 and suggested it would be a good "John Stossel" story. Mary



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Re: Peter Jennings and Botox

Re : Re: Peter Jennings and Botox --- MaryNY
Posted by Rita Molnar , Feb 17,2002,14:38 Top of Thread Archive
Good going, Mary.....they'll hear us before long !!!!
20/20....wow, you're aiming high. That's good. John Stossel likes stories like these.



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Re: Peter Jennings and Botox

Re : Re: Peter Jennings and Botox --- Rita Molnar
Posted by colleen , Feb 17,2002,19:50 Top of Thread Archive
I sent one to A B C news and Peter Jennings
Colleen in IL



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Re: Peter Jennings and Botox

Re : Re: Peter Jennings and Botox --- colleen
Posted by Kelly Saffell , Feb 17,2002,20:13 Top of Thread Archive
Me too!



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Re: Peter Jennings and Botox

Re : Peter Jennings and Botox --- Rita Molnar
Posted by Geri Arts , Feb 18,2002,18:09 Top of Thread Archive
Glad to see you all are trying to get the word out about the use of botax for blepharospasm and dystonia. I have another suggestion about how to publicize this information. Almost every local news cast has a health segment (ad nauseum sometimes!). It wouldn't be too difficult to call a local reporter but having been in the communications field, I know they need written information especially in a case like this where you have to be very accurate about the facts. Maybe the BEBRF could put out a press release vis a vis the latest touting of botax as a cosmetic cure-all.

Alas, my sister who is a young 50+ has now experienced shut-down of both eyelids and cannot drive anymore cause she had a scary experience the last time she got in her SUV. Reason: she has not had any botax since early November and the results only lasted two weeks. She is still waiting word from her insurance company as to why this visit and a prior one were not covered. So, she can't make another appointment.




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Re: Peter Jennings and Botox

Re : Re: Peter Jennings and Botox --- Geri Arts
Posted by kathy , Feb 19,2002,06:06 Top of Thread Archive
well who is going to be in charge of getting this press release done except for bebrf itself. I think World News Tonight would be good as BEB IS a worldwide problem! It is not a local one.



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Re: BOTOX/GERI

Re : Re: Peter Jennings and Botox --- Geri Arts
Posted by June in Toronto (June Floyd,June in Toronto), Feb 19,2002,07:10 Top of Thread Archive
Sorry to hear about your sister's dilemma with the insurance company, Geri, and with BOTOX not working for her. You had a good idea about calling a local reporter as well. PLEASE NOTE, though that we have to get the spelling correct - its BOTOX (not botax) - we had a discussion on this board a week or so ago about that. Best wishes to your sister,.

June in Toronto (beb/meige)




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Re: Peter Jennings and Botox

Re : Re: Peter Jennings and Botox --- Geri Arts
Posted by Kelly Saffell , Feb 19,2002,08:28 Top of Thread Archive
Back in May I was on the local Fox news health report with my neurologist discussing BEB, dystonia, and BOTOX. I have contacted the other local news programs and newspapers with no response so far. My sights are set on Oprah!
Kelly in Dallas



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