Let me introduce myself. I am a 22-year old young man from Denmark who suffers from Plantar Fibromatosis/Ledderhose disease. I have suffered from this condition in more than 10 years. During this period the condition has become more and more severe. By now it is a major obstacle preventing me from living my every-day life. I have been through the Danish health-care system and no-one has offered me treatment. Apparently there is a lack of knowledge and experience with regard to ledderhose and related diseases in Denmark. The latest doctor whom I visited told that there is substantiel risk of cancer when receiving RT. I am not sure what to believe, partly because I myself could not find evidence that support my doctor´s opinion. Therefore I am reaching out to you. Are some of you familiar with researches that revolve about this topic?

Furthermore, which other treatment options have you (ledderhose patients) looked into or received? I have read about collagenase Clostridium histolyticum - which i suppose is used synonymously with the name Xiapex/Xiaflex? Do any of you guys have experience with that treatment?

Best, Marius

Thank you very much for the answer! I have read some promising things about radiation therapy on this forum and recognized the name of Dr. seegenschmiedt in different posts. I have therefore scheduled an appointment with a clinic called Strahlentherapie Duisburg - a clinic to which doctor seegenschmiedt is associated. With the increased risk of cancer, (i´m 22) in mind, I am wondering if it would be better if i began with vitrase or xiapex injections? I have seen people on this forum mention Dr. Davis from San Antonio when it comes to vitrase/hyaluronidase injections. But I find it difficult to source evidence with regard to vitrase/hyaluronidase injections. To your mind, would it be better if I tried vitrase treatment before RT?

Best Regards Marius

wach:

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"I find it difficult to source evidence with regard to vitrase/hyaluronidase injections." Me too ... I never heard that vitrase would help curing Dupuytren's or Ledderhose. -- To my knowledge, trials to use Xiaflex for Ledderhose have been stopped. Probably the results were not very promising. And currently, as the vendot stopped selling Xiaflex in Europe, it would have to be imported, making it prohibitively expensive.

BTW, Prof. Seegenschmiedt is offering video consultation. Maybe that would be an easy start?

I have Dupuytren’s on both hands with one hand having an aggressive form. As there is no cure for this disease, I chose to have radiation treatment on my hands. First treatment is 5 days in a row with low dose of radiation aimed directly at affected areas , then a 2 month “resting” period and a second round of 5 days. I will be doing my second round in 2 weeks. Radiation can slow down progression of the disease and kill any active cells. This can be done on hands and feet.
There is a facebook group called DART - has tons of information and resources as well as people sharing their stories and results from all around the world.
Good luck.