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These three conditions, together with Garrod’s pads, are similar from a biochemical, histological and pathogenic point of view. They are also tightly related, so that having one of them greatly increases the probability that you will also find yourself with another. The family of genes that predisposes you to one seems to predispose you to another.
They are not, however, histologically identical, their manifestations are different, and they do not progress in the same way. This variance may result from the different ways in which the collagen and other tissue is organised in the palm, sole and penis, the histology and development being channelled differently by their contexts, but it is possible that elements of the disease are sufficiently different from one context to another for them to be regarded as different diseases.
It is even possible that each one of them is not really a single disease, but a closely-related set of diseases that manifest in very similar ways.
Although about 1 in 5 men with Peyronie's disease also have Dupuytren's disease, it seems to be rather different from both Dupuytren's and Ledderhose disease in that it affects men without regard to their ancestry (there's no tendency for their ancestors to come from Europe), it can appear very abruptly, and there is some evidence that it can also sometimes disappear without treatment. Furthermore, it seems to respond to sonic shock, which has not proven to work particularly well with the other diseases.
Of particular significance to DART, the diseases do not seem to respond in the same way to radiation therapy, with Peyronie’s perhaps being the most responsive and Dupuytren’s disease the most recalcitrant.
Despite these differences, the diseases are sufficiently similar for them to be discussed as if they were a single disease (superficial fibromatosis) with different manifestations in different parts of the body. This is the approach taken in these FAQs, except where the diseases are sufficiently different to be treated separately.
Although Dupuytren’s and Ledderhose present differently (diffuse nodules and no cords, randomly oriented fibres rather than aligned ones, etc) the default position is that they are manifestations of the same underlying pathology in different environments. This assumption (and it is a big one) leads to the conclusion that what works for Dupuytren's should work for Ledderhose. Is that true? Murphy's Law says "Probably not", but it's the best starting point that we have.
Yes. People with Dupuytren's disease are more likely than those without it to have, to develop or to have had:
- Ledderhose disease (plantar fibromatosis)
- Peyronie’s disease (penile fibromatosis: by definition, only men need apply)
- Garrod’s pads (knuckle pads, holoderma)
- Frozen shoulder (adhesive capsulitis)
- Carpal tunnel syndrome
- Trigger finger
It seems probable that other diseases that are involved or are provoked by abnormal accumulation of collagen are also associated with Dupuytren's disease.
A fibromatosis is an abnormal, non-cancerous (benign) growth that results in a mass of tissue (a neoplasm or tumour).
Fibromatoses are characterised by proliferating fibroblasts, growth into and around neighbouring tissue, and the tendency to recur when removed surgically.
Related fibromatosis include plantar, penile and palmar fibromatosis, and holoderma – respectively Ledderhose, Peyronie’s and Dupuytren's disease, and Garrod’s pads.
No. At least, not yet; and given the complexity of the disease, it seems unlikely that a silver bullet awaits discovery.Add an answer to this item.
The disease can, and very often does, progress silently. Most people with the disease don’t know that they have it. Some don’t know because the nodules are mistaken for calluses or random sore lumps in the sole. Some don’t know they have it even when it has progressed so far that one or more fingers are curling toward the palm. They imagine that it is just a standard consequence of getting older.
Painlessness used to be (and still is for some doctors) a diagnostic for the disease. So although some people feel itching or tingling, and some people find it painful, many – perhaps most – people with the disease don’t experience the tingling or pain that is so characteristic for others. So tingling or pain are symptoms of the disease for some people, but absence of tingling, or painlessness, is not a sign that the disease isn’t progressing.
If you see changes in your hands or feet over the course of a couple of months, then the disease is active, even if it doesn’t call attention to itself. And perhaps if you see structural changes in that kind of time frame it will progress just as much in the next couple of months, which is to say rather rapidly. Or perhaps it won’t. This disease is very much stop-start, but one in which we have no forewarning of how long the pauses will be, or how rapid the spurts.
In all the very limited medical literature on the subject, it seems that radiation therapy is most likely to be effective when it happens earlier, and the earlier it is applied, the more likely it is to be effective. Anyone with early-stage Dupuytren’s or Ledderhose has a very difficult decision. Let me illustrate it with a famous scene from a 1970 film, Dirty Harry. Harry, a policeman, is talking to a thug who is prone but reaching slowly for his gun. Harry says,
‘"Did he fire six shots or only five?"', says Harry. 'Well to tell you the truth in all this excitement I kinda lost track myself. But being this is a .44 Magnum, the most powerful handgun in the world and would blow your head clean off, you've gotta ask yourself one question: "Do I feel lucky?" Well, do ya, punk?’
In the case of this disease, waiting another month is like betting that Harry has no rounds left. But the disease is unpredictable and might just stop right now – Harry has fired all his bullets. Radiation therapy might be unnecessary. You cannot know the future. So all you can do is balance risks.
But here’s the thing. Any progress the disease makes, however small, is likely to be irreversible. It might stop, or it might go on. It won’t go back. So, the risk is about balancing “it’s finished progressing and therapy would be a waste” with “next time I look, things will be a little worse, and therapy might prevent that”.
Now all this means that we have to balance “act now and accept the bad things about radiation therapy” with “wait and hope things won’t get worse”. This decision is made a little more difficult by the knowledge that for most people with the disease, things don’t get worse. But you are not most people.
If you know the disease is getting worse – you’ve seen structural changes over the last few months, for example – the little knowledge you have tells you that you are possibly not among the majority for whom the disease never progresses far. The hope that things won’t get worse begins to look more like optimism, and between hope and optimism there is a yawning gulf.
So that means that the decision looks like a non-decision, except for the “bad things about radiation therapy.” Which are that it (a) doesn’t always help, (b) is inconvenient and costs a great deal of money, (c) sometimes has side effects.
There’s nothing anyone can do about (a). Some people seem to get little or no benefit from the therapy, and we don’t know why. It seems to be a small minority, though because the failure is such a huge blow, we tend to hear about each case in which new nodules and cords form after RT, so the possibility of failure cannot be far from our minds.
So (b), then. Yes, it’s inconvenient, but so is being crippled. It costs a lot. It may cost too much, in which case it isn’t an option. It may cost enough that you have to relinquish the opportunity to do something you really wanted to do but set against that is the possibility of losing the function of your hand or being unable to walk or going for equally expensive (and far more painful) surgery later.
Which leaves (c), the side effects, which tend to be trivial (red skin, dry skin, thin skin, peeling) or at least temporary (sunburn, blistering). Set against the possibility of stopping the disease, even for a few years, these seem more like inconveniences than obstacles.
For most people, nothing much; for a few, more or less rapid progress in the disease.
A major study in Iceland showed that most people who started the year with nodules and cords had no changes by the end of the year, but 2% of such people had developed contractures, and 2% of those with contractures at the start of any given year had worsened by the end of the year.
The study doesn’t show this, but it seems likely that those of us with a strong diathesis are “fast track” people who will see the disease progress rapidly, while those with a low diathesis will see little change year on year.
If you have low diathesis, then depending on how old you are, the chances are good that your Dupuytren's or Ledderhose disease will remain more or less as it is until you die.
Of course, the younger you are, the more likely it is, from a statistical point of view, that your disease will progress because it has more years in which to do so; unfortunately, if you were particularly young when the disease first appeared, it’s possible that you have a strong diathesis.
No. The diseases are very close to what the body does normally, so there are no known indices that can be discovered in either blood or biopsy.
Diabetes messes up your metabolism in several ways.
In particular, it encourages sugar to attach to some proteins, which stops them from folding correctly or makes them unstable. It damages nerves and blood vessels and it slows the degradation of collagen, tending to make it accumulate in the skin and fascia.
This accumulation of collagen seems to be instrumental in causing or starting trigger finger, Dupuytren’s and Ledderhose diseases.
The changes in collagen and connective tissue can trap the median nerve in the carpal tunnel, causing carpal tunnel syndrome, which is common among people with diabetes.
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Contact information provided below for radiation oncologists who have treated for Dupuytren's Contracture or Ledderhose . Comments or opinions expressed here or on DART are not intended to diagnose or prevent disease. Advice or comments should not be relied upon unless confirmed by your treating physician. No doctor-patient relationship is intended and members are advised to consult their doctors for medical advice. No representation is made about the quality or professional competency of the listed doctors. This listing provided as a place for you to begin your own research. If you find the contact info outdated or in error, please comment on DART where it can be corrected. You might also google the doctor or clinic to find updated contact information. Many of these doctors also practice at secondary locations that may be closer to you. Check their website. In addition to their clinical practice, many of these radoncs are also on the faculty of local medical schools where they teach radiation oncology. If you have doctor or clinic information not listed below, please share with DART so it can be made available to others looking for treatment in that location. some photos from dupuytrens.org Thank you.
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