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Totally Agree
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12/05/2004 23:59
Hopefully Helpful

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12/05/2004 23:59
Hopefully Helpful

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On Target

Randy...

Thanks for the comments... they are on target.

12/05/2004 23:36
Michael Lusk

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12/05/2004 23:36
Michael Lusk

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Dupuytren~sq~s and Mortality


Randy & others,

I'm not claiming that the Dupuytren's itself is killing people, only that studies show that it (in it's stage 2 form) is linked somehow to increased mortality, particuliarly from cancer (The same is true of other familial diseases characterized by benign tumors, like neurofibromatis, tuberous sclerosis, and familial adenomatosis polyposis coli). And of course these are population studies - not everyone (or even most) with stage 2 DD will die earlier, but a greater proportion than of the non-DD or stage 1 DD population will. And that means that the average life expectency of DD'ers is less -by how much I don't know.

I refer you to the Journal of Clinical Epidemiology, vol. 55, issue 1, to a write-up of a study undertaken in Reykjavik, Iceland on Dupuytren's and mortality. The study was prompted by the observation that there were a dearth of people at age 75 in Iceland with stage 2 DD.

I will readily admit that the subject needs more study, and that there are important unanswered questions. And believe me, I would love it if my concerns turn out to be unfounded. If some knowledgeable person can point to a flaw that would invalidate the conclusions in the studies, or my conclusions, I will buy them a bottle of their favorite wine and pay the shipping charges too. So come on you scientists, hit me with your best shot!

Brian asked what type of cancer is associated with DD. The study seems to show increased mortality from all types of cancer, with death by cancer accounting for 42% of the total increase in mortality. One puzzling or curious aspect of the study is that there seems to be no statistically meaningful difference in the INCIDENCE of cancer, only that more stage 2 DD'ers die from it once they get it. This could mean that cancer is more aggressive in DD'ers, or that it doesn't get diagnosed as soon.

Your point that we shouldn't lose sleep because there's nothing we can do about it is a good one. I'm not advocating despair, but I am advocating awareness. Perhaps if DD'ers are more alert to the danger, more cancers could be caught in time. And it does seem that if there were some way to organize, maybe something like a Dupuytren's Disiease Foundation, that there would be more awareness, more advocacy and more funds available for research. Maybe a DDF could have funded the Collegenase trials.

And finally, it just seems to me that just about everything there is to say about NA has been said. One more message in this forum about this doctor or that doctor isn't going raise awareness any more than it is already.

-MML


12/06/2004 23:55
Randy H.

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12/06/2004 23:55
Randy H.

not registered

Keep the Focus!

Michael,

Thanks for bring us fact based info. Nowhere else can Dups sufferers come together and share data and opinions. I'm sure you know how fortunate you are for discovering this site and learning that at least *one* alternative to Traditional Invasive Surgery exists: NA. How fortunate is that? Well, I would venture a guess that something well over 95% of Dups suffers don't know what you now know. I'd call that rarefied air.

Now, since this site is the undisputed top vehicle responsible for placing a *small* wedge in the Dups Surgical Juggernaut in the US and elsewhere, it has done the most good for us of anything I can think of. Read the testimonies. The knowledge of NA gained through this site has now impacted many lives. This is only because post after post has proclaimed the benefits of NA and the doctors willing to offer it. The newly diagnosed fortunate enough to find us have found an option to surgery because NA has become the #1 topic of discussion. This must remain so for this site to continue being the major force for change in the treatment of our disease.

Yes, NA has becomes "old hat" for us who have learned the truth. However, I suggest you replace your boredom with the knowledge that the more "newbies" (as you and I once were) that learn about NA, the sooner we will not be required to make the sojourn to Jup. FL to get the help we need.
This is not about you or me, but a *movement* to greatly improve the care of the vast majority of those who still think that they have no choice but the knife.

You want to "organize"? Great! But right now we are in a struggle just to expand patient awareness of NA past what can't be more than 3% of our fellow sufferers. If we can't do *that* for starters, we're just tilting at Windmills when we get our eyes off the Prize. Lets keep making the Main Thing the Main Thing

12/06/2004 23:00
Eddie 
12/06/2004 23:00
Eddie 
Cancer

Micheal,
You know what... I am 19 young in many eyes and suffer from DC in both hands contractular in right hand and got cord in left thumb...

Now i sit here and read your post... All you want is a fight. And i can tell you what you can go and do.

Go outside and punch a wall or something.

People in the forum have ebough problems as it is and we really dont need to sit here and read your more than enough of verbal bull shit.

Speak soon gang Eddie ;)

12/06/2004 23:02
Sean 
12/06/2004 23:02
Sean 
Cancer

Michael,
Most studies concerning the association of cancer and DD is from the factor of lifestyle (smoking, high cholesterol, triglycerides and alcohol use). When lifestyle factor is eliminated, the cancer rate is not very significant. The 53 page paper listed below is very good. Pay close attention to pages 34-36.

http://publications.uu.se/uu/fulltext/nbn_se_uu_diva-1794.pdf#search='dupuytren%20s%20contracture%20uppsala'


12/06/2004 23:32
Michael Lusk

not registered

12/06/2004 23:32
Michael Lusk

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The Uppsala Study


Sean,

Thanks for the link to the study to the Uppsala study - it's really excellent, and I also recommend it to anyone who has the background to understand it (and has a medical dictionary at the ready).

I have to digest it more before I can comment much on it; but upon first perusal, I don't think that it actually does attribute the increase in mortality to factors such as smoking, diabetes, etc. They corrected for all that stuff. On the whole, I think it reinforces the Reykjavik study.

Best Regards, Michael

12/07/2004 23:05
Randy H.

not registered

12/07/2004 23:05
Randy H.

not registered

Great Link Sean

Watch out Mike. Sean knows his stuff :)

12/16/2004 23:33
Frances

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12/16/2004 23:33
Frances

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Great Link Sean

Yes he does. Sean provides much good information.

Thank you Sean.

Frances

12/16/2004 23:46
Keith Denkler MD

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12/16/2004 23:46
Keith Denkler MD

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Great Link Sean

Great link on a very informative paper Sean.
Here it is again for other readers

http://publications.uu.se/uu/fulltext/nbn_se_uu_diva-1794.pdf#search='dupuytren%20s%20contracture%20uppsala'

Keith

12/17/2004 23:32
Frances

not registered

12/17/2004 23:32
Frances

not registered

Once again

I did not make the comment about Sean.

Someone else is clearly using the nickname Frances.

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