If anyone out there thinks they my have this disease, please don't wait to get treated. I've been going to doctors for the last year. The year before that , I was diagnosed with frozen shoulder,which took a year to completely heal. One month after that my left hand was swollen when I woke up. It was stinging really bad and my ring finger and pinky were starting to contract. I didn't have any nodules or dimpling in the palm. Within 1 month, i had 90 degree contracture, and 3 weeks later I had the middle finger that was contracting. I saw 5 doctors, had x-rays, mri, nerve test and they said the results were normal. I now have 190 degree contracture of all fingers except the thumb. Now they tell me it's to late for any treatment. Also somehow the bicep tendon was involved from the frozen shoulder, and my left arm is 6 in. shorter than my right. If anyone knows of anything I can do, or any tips on coping with everyday life, please let me know. This is very depressing.
I'm 54 female, and i don't know anyone with this disease.

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We may be in the minority but there are a few of us. I'm a 58 year old woman with the whole diathesis.

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I am a 63 year-old female just diagnosed. My 66 year-old sister also has it but didn't know what it was until I was diagnosed. I have some pain and discomfort and have been having shoulder pain lately. So far I don't have contracture, but the cords are getting quite large. Also only have it in right hand. My doctor says there is nothing he can do until I get a 30 degree contrature. Why do the doctors say there is no pain with this disease? Evidentally they have never had it.

I don't know about radiation but I've had both the invasive surgery and the NA treatment. My contracture came back worse than ever 3-4 years after the invasive surgery. Doctor recommended fusing my knuckle so I went looking for new treatments and found NA. I just had the NA just weeks ago and its FANTASTIC!. One day, in and out ... bandages off the next day ... was building a fence two days later ... played the piano 72 hours later ... I've already booked the treatment for my other hand.

From my experience, and the people I know with it, once you see it, you got it. No amount of vitamins and/or stretching is going to halt the inevitable growth. Had my first surgery at age 46. Had the NA at 50. I anticipate probably having a few more but the NA is so much easier than invasive surgery the prospects don't seem daunting at all.

You have several options, including doing nothing and having more NA procedures on a periodic basis. Open hand surgery and with this comes the decision on which approach, fasciectomy, grafts, etc., and even the tourniquet approach used by the surgeon which has an impact on the likelihood for various complications from the surgery. You can take supplements such as NAC. Or you can get radiotherapy.

I have had NA performed on both hands and am now receiving radiotherapy, returning to Essen, Germany in August. NAC and radiotherapy are the only treatments that I have concluded from my own research (limited by what I could find on the Internet as a non-medical practitioner) that are likely to halt or delay the progression of the disease.

NA and most open hand surgeries only deal with the effects of the disease that you have. Physical therapy and some pain may be necessary to maintain the benefits from the NA and it seems that any number of incidents that trigger the body's wound repair mechanisms can worsen the disease in individuals.

You are in a better position than I in that you are a Canadian citizen and have access to the two hospitals in Montreal that are providing radiotherapy treatment for Dupuytren's. Your costs will be 1/100th of mine to go twice to Germany from California for my two rounds of radiotherapy.

I would recommend taking the time and expense to have a consultation with a doctor at one of these hospitals and then deciding whether you want to proceed with the treatment. Contact information is provided on this website but from my experience I would suggest having someone who is fluent in French make the appointments and if at all possible accompany you to the hospital for the consultation.

I had no success in reaching anyone at either hospital who spoke English and so I ended up traveling to Germany to receive radiotherapy where my lack of fluency in German has not been a problem.

Bruce

NAC is a supplement that is metabolized by the body into a substance that has been shown to be beneficial for some fibrosis disorders. It is also a great anti-oxidant so there are benefits in general in taking it as well.

Radiotherapy is traditional radiation for benign conditions and is covered on the website. My exposures were low radiation for 3 minutes each day for 5 days, a 2-3 month break for the body to recover, and then a second set of treatments.

This approach is being used to minimize calcification with hip replacements and to minimize scaring with surgery including cosmetic surgery and prostrate surgery so the concept is not new to the medical community.

In theory at a very simple level the radiation damages the underlying cells in the connective tissue that is not functioning properly and causing normal tissue to become more fiberous and produce all the visible effects of nodules and contractures.

If you send me an email at stenman@earthlink.net I will send you a paper on a study in PDF format. It is by Dr. Seegenschmiedt who has been treating patients with Dupuytren's disease with radiotherapy for more than a decade.

The people in Montreal can do the best job of explaining the procedure, risks, and rationale behind the radiotherapy treatment, and answering questions specific to how they provide the service at their hospitals.

Speaking only for myself, the procedure is very fast, painless, and I have had no side effects whatsover as a result. Of course it is early in my treatment and I have yet to receive the second set of treatments. Others on the forum have a longer period since their radiotherapy and can provide a much better picture of any possible long term complications.

As it has been impossible for me to gain any information on the Montreal facilities, any information you are able to obtain would no doubt be very helpful to others living in North America and interested in obtaining radiotherapy treatment closer to home. Please post any information you can.

Thanks,

Bruce