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07/28/2007 00:30
stage Onenot registered
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07/28/2007 00:30
stage Onenot registered
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NA
Recently, I met a man with curled fingers. I asked if he had Dupuytrens and knew about NA.
I showed him my twice "operated" fingers in contrast to his still deformed hand after two surguries.
Clearly there is more educational work to do. This man was educated, but mis-informed. We need to
have a public awareness component to our eefforts. It is not yet a matter of choice; it remains a lack
of alternatives. Imagine if every toothache resulted in an extraction. Alternatives exist. This can be consumer driven, We may need a dual effort: Hand surgeons, and THE PUBLIC. Perhaps there exists a test
market where public service ads can run and fill the pipeline. Move on from there. Ask Dr. Eaton for an
opinion. Where are the cases coming from? Let's try a public service anouncement there and build on it. Sugestions/criticisms anyone?
Oh; it took me several tries to conclude this post because of the "Code" vagaries. Welcher Unsinne!
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07/28/2007 01:42
raynora 
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07/28/2007 01:42
raynora
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Re: NA
The article in the New York Times about NA is a start... but it is still amazing how
hand surgeons go out of their way to discourage NA as an alternative to surgery.
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07/29/2007 14:59
lee
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07/29/2007 14:59
lee
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Re: NA
I have just heard about the alternative method of N/A and am very excited at the prospect of using this procedure to correct my curled fingers, primarily on the left hand, though am having the sensations beginning now with my right hand and seeing the typical signs.
Since the NY Times article, I have been doing a lot of research. It appears that Dr. Eaton is very qualified. His website is easily accessible and answers more questions than I ever knew to ask.
I would be very interested in feed-back from anyone who has had the N/A procedure done by Dr. Eaton....results (good and bad), recovering time, splints and reccurrance.
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07/30/2007 19:43
Randy_H 
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07/30/2007 19:43
Randy_H
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To Stage One
I totally agree with all your ideas, but how to do them? Essentially we NA advocates from the BioS Forum are in the same spot we've always been in, except now the inmates are running the asylum here on *this* Forum, not the Trolls, Spammers or NA Naysayers (Though I do miss the old days in some perverted way) :-) We are getting this site higher and higher on the search engines. To me that is job #1. The web is how this all started and is the cheapest means we have to educate.
The Dupretrens Society that hosts this Forum is the *only* patient advocacy group for NA that exists. It needs money and people with ideas and energy to see thing done. If you haven't joined and made a donation it would be greatly appreciated.
The posting code has completely eliminated the Spammers. It's worth it. We were being shut down.
Edited at 07/30/07 22:50
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08/01/2007 07:00
wach  Administrator
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08/01/2007 07:00
wach Administrator
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public relations
To Stage One: I think we all agree with you, we need better coverage in the media. A well ranking web site is good and an easy start but print media and TV are probably even more important. We would either need someone who has experience with public relations and write up press releases, or we need to hire an agency. The latter would be expensive we don't have the money (yet, I hope). We might need to first start a Dupuytren organization in the US to get registered and be able to issue tax receipts for donations. We are working on that already.
Wolfgang
Quote:
... This can be consumer driven, We may need a dual effort: Hand surgeons, and THE PUBLIC. ...
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08/09/2007 04:59
Sandie1141 
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08/09/2007 04:59
Sandie1141
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Re: NA
I think it would be a great idea for each of us to send out an email about Dupuytren's to everyone we know, asking them to send it to everyone they know, in case someone knows someone who might have it. We could put this link in the email and maybe a couple of others.
I think it would be really interesting to see how far it grows.
What do you think??
Sandie
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08/09/2007 06:23
wach Administrator
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08/09/2007 06:23
wach Administrator
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Re: NA
Sandie, to me that sounds like a great idea! It doesn't cost anything and still spreads the knowledge. Maybe not as efficiently as print media or TV but much easier and cheaper! If it is OK with you I will use your suggestion and distribute it, as a first step, to the registered members of this forum.
Wolfgang
Quote:
I think it would be a great idea for each of us to send out an email about Dupuytren's to everyone we know, asking them to send it to everyone they know, in case someone knows someone who might have it. We could put this link in the email and maybe a couple of others.
I think it would be really interesting to see how far it grows.
What do you think??
Sandie
Edited at 08/09/07 09:24
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08/09/2007 20:34
Sandie1141
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08/09/2007 20:34
Sandie1141
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Re: NA
I'm ready to go when you are! I would love to see how many states and countries we can reach! Sandie
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