Diane,

I absolutely agree we need research to ascertain the origin and "triggers" of DD. But how do we make that happen? My disease accelerated without any treatment, yours and others after Xiaflex or surgery while others have been helped by these treatments. We have no one investigating, that I know of, what is going on except the Auxilium/Xiaflex clinical trials.

Perhaps a research proposal or request to NIH or the Mayo Clinic or Auxilium or a university would get this started.

One note I did not remember to pass on regarding my doctor's appointment. When fingers are contracted, especially to the level mine are, it is difficult to keep them clean and dry. My surgeon recommended getting foot powder and after washing and drying as thoroughly as you can sprinkle some of the foot powder on your finger(s) and hand(s).

The foot powder is an anti-fungal to cure or prevent Athletes Foot. Using it on your DD afflicted hands it reduces the chance of fungal infections at injection, NA needle or incision sites. In using this idea for three days my skin quality on the two contracted fingers has improved significantly. The MD also recommended placing a dry rolled up washcloth under the fingers when you can. I cannot get a washcloth under the fingers but cut up a tee shirt into very small pieces and it serves the same purpose.

Obviously check with your own doctors and make your own decisions.

Take care all, Brian_PDX

21 pages of research here:
http://tinyurl.com/kzu7xgl

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".

As you say Callie this is difficult condition to pin down. Although the personal experiences of the individuals on this website is interesting and varied to be sure, one cannot generalize from those very well. There may be a lot of people out there who get DT, have surgery, and they are done for a long period of time - and these people may never show up on a website such as this. Some of the experiences with treatment and re-occurence of disease may be coincidental rather that causal relationship. As Brian and others have noted, only research can really bring some order and true understanding to this condition. Since is is not life threatening nor severely debilitating - it probably will be hard to attract attention for grants etc. - unless there is money to be made off it. Unfortunately that type of research is unlikely to shed light on more than just a few aspects of this.

Bria

Thanks everyone or your time & effort contributing. It's very much appreciated. Callie: I wonder if you would please detail the types of preventative medicine that your new doctor prescribed? I might steer away from these! I've started acupuncture, but I insisted she kept the needles well away from the DD area. She is instead working to boost my liver function generally. I'll let you know if I've noticed a difference either way.
Cheers JulieB