I'm new to this forum. I am 37 and got my first nodule 4 years ago. It hasn’t grown much since then, but I’ve gotten 4 other nodules, 2 with visible cords forming. So I have nodules in both hands, 2 on one hand and 3 on the other, but no contraction yet. I also have smallish knuckle pads on a few fingers. In the reading that I have done it seems that I qualify as someone with what would be characterized as diathesis (male, early onset, family history, knuckle pads). On the other hand, I’m not diabetic, a smoker or an alcoholic. I know that the association is not proven, but I have a strong hunch that my Dup’s was brought on by intense rock climbing (2 nodules formed below my left middle and ring fingers shortly after injuring my hand below those 2 fingers while climbing). I have since stopped climbing.
From my reading, a constant theme on this site is that everyone’s experience with this disease is different, but can anyone give me some sense of the probability that I will have total and permanent disability in one or both hands at some point? Also, for people with an aggressive form of the disease, are they more prone to other fibrotic diseases (I know about Ledderhose and Peyronie’s, but I’m thinking about internal organ fibrosis because I’m a bit of a hypochondriac).
I know there are much more difficult things to have to deal with, but I’m still very worried about losing the use of my hands at an early age, and wonder whether this condition is a harbinger of worse things to come.
Prone to other fibrotic diseases? No, I've not read of that. You might read this: http://www.dupuytrenfoundation.org/affec...conditions.html Besides Ledderhose and Peyronie’s, frozen shoulder is the only other related disease I am aware of. You mentioned DD and knuckle pads.
I also have the diathesis presentation and I think basically it is much more aggressive biology which includes a higher rate of recurrence among other things.
I have contracture on one finger but tightening (loss of backwards flexion) on others. Other than being careful with my hands, wearing gloves and avoiding some tasks and giving up a few things, it is business as normal so far. That said, I've had a lot of issues with painful and tender nodules. I'm 59 and my DD showed up about 1 1/2 years ago. I also have some activity in my feet.
I had RT last year which helped a little but did not stop the disease. I've read in about one third the cases RT does not work so well.
I have the diathesis. Started with injury to finger when I was 16, and the collagen has been working ever since making my feet, hands and penis lumpy and contracted. The hands are the worst. 9 surgerys and one xiaflex injection later, I can say that I have good use of my hands, but am glad I am not a pianist. I'm awaiting my 10th surgery and first NA in three weeks. The best treatment for me has been skin grafts. The bands cannot form through a graft, and the nodules near the graft are much less likely to grow. I will only have surgery now if it involves a graft. All the surgeries I've had without grafts have rapidly led to recurrance. The surgery schedule has been every 2-3 years, mostly on the PIP joints.
The rt foot has a nodule and a band to one big toe, but not disabling.
The peyronies is now in remission it's effect upon erections has disappeared.
You need to make big bucks to pay for your treatments, or live/work in a place where insurance can help with the expenses.
I have left the US and work overseas in part to insure that I can get my disease treated and prevent becoming disabled or broke by the time I retire.
Thanks for the info Richard. If it was your intention to put my troubles with DC in perspective - mission accomplished. But it's good to know that even someone with a very severe presentation of the disease can lead a somewhat normal life, being forced to leave the US notwithstanding.
Hi Altorach, I also think climbing could have been the trigger for you (paper attached). I also think there's no point in worrying for something that might or might not happen. In many cases the disease is not serious and nowadays there are many treatments availbale. Plus, new research and treatments are being discovered every day (collagenase injection is quite new), so maybe there will be an easy fix by the time you need it.
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