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Root cause - is anybody anywhere flying the helicopter?
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02/18/2009 21:58
philwaite 
02/18/2009 21:58
philwaite 
Root cause - is anybody anywhere flying the helicopter?

I have read that there is clear empirical data that links Dupytrens, Ledderhose, Peyronies, Frozen Shoulder & others. In other words, if you are unlucky enough to suffer from any one of these problems, the chances are that you will also be vulnerable to at least one of the other problems. Input & feedback on this forum seems to confirm that this is indeed the case.

Sufferers swap experiences and treatment advice for their current issues, which is of course fantastic, but are we missing a vital opportunity?

Are any branches of ‘main stream’ medicine looking at the main root cause of this ‘cluster’ of conditions? Instead of looking at fixing each of the individual conditions as they take their place in our health development, shouldn’t we be concentrating on the probable ‘common drivers’ or ‘root causes’?

Instead of fighting one skirmish at a time, is anyone flying a diagnostic helicopter that gives them a broader view of the whole battlefield?

02/18/2009 23:45
DupFoundation 
02/18/2009 23:45
DupFoundation 
Re: Root cause - is anybody anywhere flying the helicopter?

You are absolutely right. We need a coordinated effort to look for a cure. There is one now.
The Dupuytren Foundation http://www.DupuytrenFoundation.org was established as a charitable foundation with the goal of finding a cure for Dupuytren's contracture and related conditions.
Efforts include current plans to:


    Establish a central literature repository of all available publications relating to Dupuytren's
    Establish an on line database that different physicians can use to enter and query clinical data
    Coordinate symposia with researchers in different fields - genetics, connective tissue biology, myofibroblast biology, surgery - to encourage collaboration
    Recruit funds (private and government grants) to sponsor research

Work is underway to collaborate with Scripps Research and other research institutions.

The time is now for the Dupuytren community to pull together. If the effort and expertise of even a fraction of those affected by Dupuytren's can be harnessed,
we can realistically hope for a cure - in our lifetimes. If we just leave it up to surgeons and drug companies, it will never happen. We need to pull together.

The Foundation needs resources which exist within the Dupuytren's community. If you want to make a difference, if you want to work for a cure, you can.
The Foundation needs people with experience or connections to those with
Foundation experience
Database / Web application experience
Fundraising / advertizing experience
Academic research affiliations
Whether you have special talents or if you are simply interested, contribute. Contact dupuytrenfoundation@gmail.com
The Foundation website is under construction and will have better functionality in the months ahead.

I was fortunate to find out about needle aponeurotomy from a patient who was part of a coordinated effort of patients on the old Biospecifics forum. That taught me
the power of patients working together, and I will always be grateful for that. We can do this, together.

I have seen thousands of Dupuytren's sufferers in the last few years and the inescapable conclusion is that we need better treatments.
I have established the Dupuytren's Foundation to make a difference, to specifically work for a cure. It is non-profit and I work as a volunteer.
I do have a personal agenda, though. I have four sons. Their late grandfather had severe Dupuytren's, with hands crippled after 5 operations.
I want better options for my sons and for their children. Everyone deserves better options.

If we work together, we can make a difference. We will find a cure.
Contact dupuytrenfoundation@gmail.com

Charles Eaton MD

02/27/2009 19:14
bstenman 
02/27/2009 19:14
bstenman 
Re: Root cause - is anybody anywhere flying the helicopter?

So long as the USA has a for profit private health care system there is little incentive to paying for research for cures and a bit incentive to pay for research on treatment. The countries that have historically funded research on disease prevention have been those with national health care as the governments realize that in the long run they will be paying more. That is why carcinogenic substances can still be put into cosmetics in the USA but not in the European Union.

All the research on X-ray treatment has been done in Germany and no one is pursuing this research in the USA. The NA procedure was being performed in France for decades before it was introduced into the USA but still most hand surgeons will not even offer it as a treatment option but only perform highly invasive fasciectomies.

You are right about addressing the root causes but the roots go to the heart of our system of medical care which is the most expensive and least effective in the world with the highest infant mortality rates and lowest life expectancy rates of any industrialized country and lower than many 3rd world countries. And this will not change so long as health care is treated as a business opportunity with the goal of maximizing profits and not the health of people. In point of fact the big pharma industry has awarded it members who have successfully created new "diseases" that provide a new market for their products. So if you really want to address root causes talk to your representatives in Congress.

12/06/2009 18:18
Marc

not registered

12/06/2009 18:18
Marc

not registered

Root cause for MD

Great Webpage!
Unfortunately I could not find much information about the root cause(s) for MD. It seems to be a genetic disease at the base, but what does trigger it, does make the nodules and cords grow?
Are there some theories? Might it be wrong nutrition, vitamin deficiency, disorder of the metabolism or some disfunction considering the fact that many MD patients are neither alcoholics nor diabetics?

Thanks

Marc from Quebec

12/06/2009 18:58
DupFoundation 
12/06/2009 18:58
DupFoundation 
Re: Root cause - is anybody anywhere flying the helicopter?

Marc, you have asked the million dollar question. The main risk is genetic, something which makes it possible to activate the normal wound healing / scar formation biology in the absence of a wound. The activating trigger remains a mystery. It may be that certain areas of the body are biologically predisposed, or that specific activating mechanical forces are found only in certain areas of the body. The wrench in the works is that this biology appears to be normal biology gone astray: you can't make normal biology more normal, and you don't want to make normal biology abnormal. Surgeons have nearly 200 years of data to conclude that surgery is good for some people and bad for others. Because every Dupuytren's hand is different and progression so slow, it's a statistical nightmare to try to assess the effectiveness of nonsurgical treatment. Assessing the outcome of treatment is trial and error medicine, which may take many lifetimes of data to establish a definitive yes or no. I believe that our best bet is to better understand the biology of Dupuytren's so that more intelligent treatment choices can be developed and tested. The 2010 Dupuytren Symposium is a joint effort of the Dupuytren Society and the Dupuytren Foundation to spur efforts for international collaboration to find a cure.

12/07/2009 13:04
philwaite 
12/07/2009 13:04
philwaite 
Re: Root cause - is anybody anywhere flying the helicopter?

Very interested in the last line of your contribution:

"The 2010 Dupuytren Symposium is a joint effort of the Dupuytren Society and the Dupuytren Foundation to spur efforts for international collaboration to find a cure"

- Where?
- When?
- Scope?
- Desired Outcome?

What this forum clearly demonstrates is that there are many people, from all walks of life, with all kinds of skills, ready & willing to positively contribute towards 'making a difference' & defeating this disease. So, what can we (Dupuytren patients & their supporters) do to help make this event a total success?

- in advance of the event
- or, maybe by attendance at the event
- follow-up after the event

Lets go!

12/07/2009 13:40
wach 

Administrator

12/07/2009 13:40
wach 

Administrator

2010 Symposium

Phil, more info on the symposium is on

http://dupuytrensymposium.com/

It is planned to be a symposium for MDs from research and clinics. The goal is to bring together experts from various areas and have them exchange results, ideas, concepts with a hopefully synergistic outcome. Any support in preparing this symposium is extremely welcome, specifically interesting areas are sponsors&funding, PR, and organiizational work. For US citizeens The Dupuytren Foundation http://www.dupuytrenfoundation.org/ is the best contact.

Wolfgang

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