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Totally Agree
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12/03/2004 23:30
Hopefuly helpful

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12/03/2004 23:30
Hopefuly helpful

not registered

Totally Agree

For a number of years I have watched this Forum, finding it a valuable source of information and experiences. I’m increasingly concerned by the tone and direction that has become dominant. I hope the site does not lose value as a constructive resource. Several thoughts...

As I understand it, Biospecifics, regardless of current ownership, is not interested in promoting NA. It is interested in developing a collagenase alternative to traditional surgery. We should all be pleased that this forum continues to be supported by Biospecifics, even though the overwhelming topic of discussion is NA, which potentially will diminish the need for collagenase injections.

This forum is not the mechanism by which NA practitioners ultimately will be peer certified. It is presumptuous for individual posters to suggest that one physician is acceptable and another is not. We are all free to choose the physician/technique we wish to have treat our afflictions, but as individuals we do not have the qualifications or information necessary to evaluate all practitioners.

It is understandable and helpful that those who have had successful NA experiences choose to share that information on this forum. I find it far less helpful that some wish to constantly police who and what is posted. Far better that the forum return to being a source of constructive and helpful information.

12/04/2004 23:40
Frances

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12/04/2004 23:40
Frances

not registered

Totally Agree

Hi,

I too have been here for years and long for the old days when people simply shared their experiences then posted the name of their doctor. If asked to provide it again, a person would do so. It was all very simple.

As NA spreads - myself and others have begun to address the larger issues and many have come to the conclusion that in order to make an informed decision regarding treatment and choice of doctor patients, 1)have a right to know and understand a doctors qualifications and 2)in order to make an informed choice all advertising for a particular doctor should be listed as such.

Dr Eaton and the Dr's from France both addressed this quite simply by making their information available to the general public through their own website so people can make an informed choice.

Perhaps this is a solution? An opportunity for informed choice - that's all I'm after.

Frances.

12/04/2004 23:00
Nancy 
12/04/2004 23:00
Nancy 
Confused

It's difficult to understand, when reading these most recent posts, who is the most nuts, and who is really only advertising for their own gain. I've been coming to this site for about 2 years and still don't know if Frances is knowlegable and sane or not. How can one who reads these sometimes personally stabbing dialogues tell? How does this help us?

12/04/2004 23:54
Sarah 
12/04/2004 23:54
Sarah 
Frances

Actually Frances,
You are quite limited in your knowledge and you are confrontational in your posts. You specifically scared me away from this forum for awhile. Anyone who challenges your opinion is criticized as not knowing what is going on. You rest your beliefs on your limited knowledge and continue to profess it to anyone new who comes aboard. Dr. Eaton..... Paris trained doctors..... There is another world out there Frances. Things are going on that you are not aware of. Take a step back.

12/04/2004 23:18
Janet

not registered

12/04/2004 23:18
Janet

not registered

the forum

I favor an open discussion of all means of treatment of DD. I welcome any information regarding the location and address of NA doctors.

Sarah, will you share the names of other NA doctors you know about? Please stay involved. We need your new thoughts and ideas. We welcome you to our NA group.

12/04/2004 23:48
Sarah 
12/04/2004 23:48
Sarah 
Other doctors

This is what I did. I worked backwards. If you go to Dr. Eaton's website, he provides you with the code for the procedure. I called my insurance company and asked them who was approved to perform that code in my state. Make sure to ask who is approved to do partial palmar fasciectomy as well. Then call the listed providers and inquire about the NA procedure.

12/05/2004 23:28
Michael Lusk

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12/05/2004 23:28
Michael Lusk

not registered

Thoughts on Forum


My thought on the forum is: there is way too much discussion of NA, and way too little of the significantly increased mortality that comes with (stage 2) Dupuytren's, in particuliar the almost doubled chance of dying of cancer. Contracture is an affliction, but it's really not so important next to the prospect of a shortened lifespan.

There are only 1000 people in the U.S. who suffer from cystic fibrosis, yet there is a Cystic Fibrosis Foundation that finances research and clinical trials. The number of stage 2 Dupuytren's sufferers in America must number in the hundreds of thousands, if not millions, and the number of years of lost life must be tremendous. Why is there no Dupuytren's Foundation?

- MML

12/05/2004 23:36
Brian

not registered

12/05/2004 23:36
Brian

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Cancer and Dup

Can you please elaborate on the connection between cancer and Dup? What type of cancer(s)?

Brian

12/05/2004 23:10
Randy H.

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12/05/2004 23:10
Randy H.

not registered

The Big Picture

Michael:

People with CF have an average life expectancy of about 32 years, whereas no one has ever died as a direct result of Dups. Besides, we have a traditionally accepted and reliable treatment: Invasive Surgery. The funding just isn't their for Dups research. As proof, this site is funded by BioSpecifics to promote their non invasive Dups treatment, injectable Collagenase. I talked to the President of BioS personally and his great anguish was that he couldn't find investors to help finish getting Federal approval for his treatment. Now the technology has been sold for other purposes and the project is all but dead. So, it is only natural that the emphasis of those on this site has shifted to the promotion of the only other *non invasive* option now available: NA.

Until we understand the exact mechanism that causes Dups, the apparent correlation of *one* study to higher mortality rates is secondary. I recommend we don't loose any sleep over this because there is noting any of can do about it. However, patient education regarding NA is. Yes, we have an in house debate regarding how important NA French Certification is. But, look at it this way. 14 months ago we had exactly *Zero* doctors doing NA in the US. Things are improving, and this site is the reason. It's not the "main" Forum for this topic. It's is currently the *Only* Forum. Lets keep it Civil.




12/05/2004 23:47
JERRY 
12/05/2004 23:47
JERRY 
D/C and Cancer

I decided to check into the forum and learn what the latest discussion may concern. Another surprise; where did this correlation occur about cancer and Dupuytren’s?

If there were indeed a connection then none of our senior citizens with Dupuytren’s would be alive and contributing to the forum.

Please stop scaring people with this nonsense.

Randy; you are doing a great job. I recall e-mailing you when you first entered the forum and gave you a bit of advice that you have followed to this day. Keep it up and remember to keep your

THUMBS UP

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