Hi, I'm a 34 year old male from UK. I developed a lump on my left foot when I was about 20. I pretty much ignored it for years, as it only occasionally bothered me in the morning when it could be stiff and sore until I've walked about for 5 mins or so. It didn't change in size or state until about 6 years ago when I fell awkwardly while kendo training, causing excruciating pain to the left instep where the lump was. I was hobbling for a month, but the interesting thing about the accident was the lump disappeared. Don't get excited though, folks - eventually the lump returned, although it is considerably smaller than before.

I eventually spoke to my Dad about this issue about 3 weeks ago - he's a retired Chiropodist - as I had noticed that a similar lump had appeared in the same area of the opposite foot. He couldn't remember the name of the disease (he retired 15 years ago and is in his eighties), but he said it isn't going to kill me so don't worry about it, but today I have discovered a second lump on my left foot, and after doing some research into the disease I am worrying about it, as I did not know that it is a progressive condition.

In my experience, I suffer pain in the instep much more when I am doing a lot of walking/running. So for the last year while working in an office, I barely noticed it, but currently I am travelling around India and I notice it much more.

Reading about the prognosis for this form of Fibromatosis, I don't see there's much point in me doing anything about it unless it begins to stop me being active, but I hope it doesn't get too bad - reading some of the other posts it seems LD can be very debilitating. I have a lot of sympathy for you guys out there suffering so much more than me.

In my twenties, I got my first lump in my left foot and a doctor removed it. I had no idea what it was or that it may someday be related to Dupuytren's disease. It came back almost immediately, so I decided to just ignore it. I am now 57 and have full blown Dupuytren's disease in my left hand and the beginnings of it in my right hand. Over the past five years, I have developed more and larger lumps in my left foot and some smaller ones in my right foot. In addition, I have knuckle pads on two of my fingers in my right hand. Thus far, the Ledderhose has not affected my walking, but the Dupuytrene's is nearing operation time. Overall, none of it is life threatening, but it has had an effect on my self esteem during the aging process. I can no longer wear certain shoes and my hands are gnarled more than normal for my age. Just sharing....

::hey,I have had Dups for at least 15 years. My right hand is the worst.I am 44.I Have a lot of pain and swelling. Both of my feet are affected in the ball of the foot and the arch but not in the heel area. My mother has a very mild case.I have had adult onset idipathic epilepsy since1992 and they say that it makes it worse.I have yet to find a Dr. to diagnose me besides an orthopedic and my eye DR. who also has Dups.Ithink a lot lf people have this and are not properly diagnosed.

Hi Yachtflame, if your toe is curling NA might actually help and would certainly be preferable to foot surgery. You would need to find a NA doctor, e.g. in the US, who tries your foot. Maybe Charles Eaton or Keith Denkler would do it. Why don't you send a picture and ask? It would be the first NA on a foot but someone has to go first and Dr. Eaton is the NA pioneer in the US.

Wolfgang

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Hi, I'm 55 living in the Virgin Islands. I have DC in both hands and have had 3 surgerys...need another on my little finger again. Tried to have the finger removed but can't find a Dr. who'll do it. I've had LD on both feet for 30 years. Large lumps with smaller one on and around them. The first Dr. that looked at them back in the '80s said to not have surgery until you can't walk as the scars are on the bottom of 160 lbs and you can't recover with your foot in a sling like your hand. Now my big toe is being pulled down like my fingers. It makes me walk on the outer side of my foot and I'm afraid it will effect my knee and spine. I've heard of the NA procedure but that won't help the curling of the toe. I guess that needs surgery. My Mother (85) has just started to get hand nodules...guess she's getting the DC from me! A brother is developing LD at 60. Seems there are a lot of us! Both sides of the family are of English decent.

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Edited 07/21/09 15:29

Hi to Jurate, who asked about my treatment in Germany. Sorry to not answer sooner, but I was spending time with new friends I'd met when I visited Berlin this past spring who were visiting me.
I had to go to Essen for 1 week of treatment, and sandwiched that into visiting Berlin before and after. As an aside, I will mention how much I enjoyed my visits to Germany, where I found history, art, beauty, and many friendly and interesting people.
Getting back to the topic of treatment: in June, I returned for my follow up treatment in Essen of 1 week low dose radiation, and so far, so good. My small nodules have shrunk, and the expectation is that they will not grow any larger.
I definitely recommend this treatment for people in the US with LD. I paid Krupp Hospital a total of 1300 Euros for the total treatment, a bargain, I would say. As for the cost of the trip, etc., take some extra time to explore Germany and consider it a vacation with benefits. When I returned in June, I spent some time in Cologne, which I loved. It is amazingly visitor-friendly, with so much to see in the vicinity of the cathedral. I stayed at an excellent small hotel, the Domstern, where you are given a warm welcome, and the breakfast room is a good place to meet other tourists. I flew into Frankfurt, and took the nonstop train from the adjoining station to Cologne. The Deutsche Bahn website is excellent: I used it for both visits to purchase and print my tickets. My travels in Germany have been so easy and pleasant, with excellent trains traveling between cities, and in Berlin, with the Berlin Card, amazing transit available to get anywhere in the city.
I see my LD as working out as a "lemon to lemonade" experience. The next trip my husband and I take to Europe will be to Germany.
Let me know if you have any more questions. I am so grateful to this site, as without it I, like so many, would now be crippled after having surgery.