Hi June,Thanks for bringing this to our attention. Also, thanks to Anne Brett, for bringing another article by Time Magazine titled, "Smile - You're On Botox"! to everyone's attention as well.
I have sent an e-mail to Time regarding this article and I have also recieved one back excepting my comments. I will also send an e-mail to Washington Post and I hope that everyone else will do so too. I agree the medical use of Botox for dystonia/SD needs to be brought to the attention of the media too.
The website address for the Time Article is: http://www.time.com/time/magazine/article/0,9171,1101020218-201900,00.html
Please Post e-mail/address to person in charge for Washington Post Article.
Regards, Jan Joiner - Alabama - SLAD'R Surgery 6/01
I agree with June. We all should protest to the media, etc. when these articles appear with no mention what-so-ever regarding Botox being used as a treatment for dystonia(s). In many instances, Botox is 'the only' treatment that people with focal dystonias depend on to return them to some normalcy! Not to even mention those who are in excruciating
pain and the Botox injections alleviate it.In numbers I truly believe we can make a difference in making our voices heard.
By the same token, when an article does appear somewhere on 'any' type of dystonia, I think we should also write a Thank You and point out that it is imperative to spread 'Dystonia Awareness'.
To bring this point 'home', this past Monday night, one of our local T.V. stations here in San Antonio ran a medical blurb about a young 32 year old man who had been misdiagnosed with Muscular Dystrophy, told he would only live to be 30, AND in reality he had generalized dystonia - severe! He had contacted our local Muscular Dystrophy Association for help as he was in horrible pain on a constant basis. Imagine his shock when they told him he didn't have M.D. and they couldn't help him. Thank goodness they referred him to a neurologist here who 'knew' what dystonia is. Correctly diagnosed he had the DBS (deep brain stimulation) surgery this past Wednesday. I found this just tragic and also beyond ludicrous! Presently I'm working hard to locate this young man to provide him with 'all' information on dystonia, what support groups are available, etc. I'm also on a passionate mission to get this T.V. station to do a follow up story on him after he has the second DBS surgery next month. I pray that his results are as awesome as 'some' of these DBS surgeries have been on other dystonia patients! If that is the case, then this young man will have his life back!
Just my thoughts on the subject.
Anne
--modified by Anne Brett at Fri, Feb 22, 2002, 07:19:07
--modified by Anne Brett at Fri, Feb 22, 2002, 07:19:33
A number of people from the Blepharospasm bulletin board e-mailed all 5 hosts of The View individually complaining about the lack of attention to Botox and its medical use.June in Toronto (beb/meige)