I would love to know how John is doing today, 6 years later. I am new to the site and not certain if RT is available here and am looking for any early stage treatment options so I am very interested in real stories.

I am 47 and in North Carolina. My mom, both her sisters, her mother and grandfather all had(while living) or have DC. The hereditary aspect is undeniable. I am sick to even discuss/agree/believe that I now am facing this. I have an appointment with a hand specialist but no formal diagnosis yet. That being said- it is starting just like my mom's did when she was 50- nodules on PIP joints. She looked at my hands and immediately knew. She has had it for 20 years, many surgeries and now a frozen pinky so I feel she knows what she is talking about. The nodules are painful and I just noticed them this year after starting kickboxing and felt a lot of pain. I now wonder if the boxing provoked it. It is clearly very early but I want to do anything and everything I can to slow this down if possible.

Fortunately, additional options besides surgery became available over the years. Should you develop a bent finger you can have collagenase injection or needle fasciotomy to correct that. Both techniques are described on this web site, http://www.dupuytren-online.info/dupuytren_collagenase.html and http://www.dupuytren-online.info/needle_aponeurotomy.html, and both are probably available in NC.

For radiotherapy we are listing one clinic in NC http://www.dupuytren-online.info/radiotherapy_clinics.html, in Winston-Salem.

Due to your heriditary load you might actually be a candidate for radiotherapy but you do not seem to have a very aggressive form of Dupuytren's. For woman the average age of onset of this disease is 50, yours started not much earlier than the average and you might get away with slow progression and might possibly not need any treatment at all. As your mother's started with 50 and she had several surgeries you might be concerned but surgeries can trigger the growth of new nodules and that might have caused more surgeries and even more nodules for your mother. Should one of your fingers contract eventually, I would avoid surgery but have it corrected minimally invasive (collagenase of needle fasciotomy). I myself had needle fasciotomy a year ago and could use my hand fully two days after. Not a big deal. And BTW, my Dupuytren's started 35 year ago and I am still doing OK, so you do not need to worry too much about Dupuytren's. Nowadays it can be treated and although it can be cured, treatments can be repeated if needed and you can get along with it. But it is useful to understand what treatments are available just in case you need them sometimes in the future.

Wolfgang

M1oscar:

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I am 47 and in North Carolina. My mom, both her sisters, her mother and grandfather all had(while living) or have DC. The hereditary aspect is undeniable. I am sick to even discuss/agree/believe that I now am facing this. I have an appointment with a hand specialist but no formal diagnosis yet. That being said- it is starting just like my mom's did when she was 50- nodules on PIP joints. She looked at my hands and immediately knew. She has had it for 20 years, many surgeries and now a frozen pinky so I feel she knows what she is talking about. The nodules are painful and I just noticed them this year after starting kickboxing and felt a lot of pain. I now wonder if the boxing provoked it. It is clearly very early but I want to do anything and everything I can to slow this down if possible.

You mention nodules on the PIP joints, is that palm side or other (top)? If other they sound like Garrods pads and indeed the kickboxing could be unhelpful. We suggest maintaining most activities within reason but perhaps protect the hands more than you have done up to now. An example, I play a lot of tennis, but now with a glove. I avoid bar pull ups altogether, but other floor exercises, such as push ups or yoga is best done using handles and not a flat hand.

I always recommend new discoveries start a record of symptoms with photos, weekly or monthly, so you build an objective records of any progression. A radiologist would be interested in your history, but as Wolfgang says for many it is slow to develop, and maybe you will never need any treatment despite your family history.

If you have no nodules on the palm side, then you are not really a candidate for radiotherapy. You must be aware that radiotherapy is not preventive. You can have it only once and therefore it makes sense to hold back with it until you really need it. I would suggest a wait and see approach and kick in with RT when you start having nodules in the palm. That may be years down the road.

Wolfgang

M1oscar:

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Dorsal side of left index finger and possibly both pinky fingers although those are much smaller. Because of family history and how my mother's case began, I assume these to be DDN and not Garrod's pads. I'm pretty anxious and may or may not be imagining that my hands feel stiff/weird. I've not noticed anything in my palms as of yet but am not an expert.