Becoming a squeaky wheel sounds like a good idea to me. DD research surely needs more funding. Money is often only available where pharmaceutical companies are involved, the other areas of reserach are hardly supported. One way to support research in the US is supporting the Dupuytren Foundation http://dupuytrens.org/. The prime goal of the Foundation is supporting research.

Wolfgang

Brian_PDX:

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Diane,

In my experience, citizens (activists) who go to their congressional reps can help get agencies like NIH funding for particular purposes. Perhaps we could do that by raising awareness of PP in general and in Congress. We all on this thread know the personal and financial costs of DD. That would be the incentive for government and private sources to provide more funding.

Auxilium could do research regarding the opinion that Xiaflex treatment accelerates the disease and then we could compare this data to patients who are helped and why. Sure they want to sell the drug, but this effort could improve the drug or at least help target the patients with the highest chance of success.

It is true that any treatment, including surgery, is less effective on the PIP joint and also more effective on the ring finger than the little finger. We should determine why. I was told by a surgeon the smaller size of the nerves in the little finger make it more difficult to treat.

It would seem prudent to determine scientifically whether any "mechanical" intervention including NA and surgery causes acceleration of the disease as well as any "chemical" intervention, Xiaflex, DMSO, etc. and if so is it just in the treated hand or both hands (systemic). It seems to me there is too much "guess work" going on around DD and we should become a "skueaky wheel".

Bastiaan,

I have had Dupuytren's for twenty years and have never even heard radiation was a viable option. I see a surgeon on Friday who is very experienced with DD and will ask him about it. My stitches are being removed from a third palmar fasciectomy.

Brian

Yeah - the research I've done indicates that RT is more popular done in Europe - and seems to be most effective at slowing progression of nodules, not eliminating existing cords. Best used on active palm nodules apparently. This makes sense as RT in general works most effectively on rapidly growing tissues (like cancer). The down side of it is that it will thin out the skin in the irradiated area - so further (or prior) procedures such as NA or surgery that also affect the quality of the skin could create the need for skin grafts or other mitigations. That said - some DT docs (often not surgeons) in the states will prescribe it if the patient wants it.

spanishbuddha:

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Brian_PDX:

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Bastiaan,

I have had Dupuytren's for twenty years and have never even heard radiation was a viable option. I see a surgeon on Friday who is very experienced with DD and will ask him about it. My stitches are being removed from a third palmar fasciectomy.

Brian

Cynic mode, in the UK the society of surgeons disapproves of RT as a viable option, for just about anything. Surgeons like to cut things out, and the irony is that their 'tool' is just as blunt an instrument as RT. So I predict your surgeon will pooh pooh the idea of RT. Having said that I recognise surgery is a valuable treatment for many medical conditions, including DD done by an experienced and skilfull surgeon. Third fasciectomy, therein lies a tale perhaps, but I'd do wish you all the best for good recovery.

The splinting following surgery is for the surrounding structures and the newly forming scar tissue. I think the splinting was important in my situation, but I am aware that there is a study floating around that says there is no advantage to splinting. The most important procedures following surgery are flexibility exercises. I did my own therapy and it worked very well.

Also, I had RT which so far seems successful. Zero side effects.

Brian and Callie. The surgeon (hand specialist) who is going to operate on me doesn't splint either. I will be having physio (physical therapy) instead. After hand surgery he likes you to use your hands/fingers as much as possible. I will be interested in the exercises you get.