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B. from Alberta

During the summer of 2013 while travelling on a road trip in the US with my family I noticed my hands were often stiff and sore after driving for an extended period. Upon closer examination I noticed small nodules or lumps had formed in the...

During the summer of 2013 while travelling on a road trip in the US with my family I noticed my hands were often stiff and sore after driving for an extended period. Upon closer examination I noticed small nodules or lumps had formed in the palm area of both of my hands. Observing the nodules over the next month it appeared they were expanding, becoming larger in some cases and additional nodules had formed in and around the cords of my ring finger and index finger on both hands. At this point the lumps were not painful nor did they cause any discomfort unless I used my hands for extended periods such as driving. As a 57-year-old male I was generally in good health and had no chronic medical conditions, so I was alarmed with the changes occurring with my hands. I consulted my family physician in the fall of 2013 and the lumps on my hands were diagnosed as Dupuytren’s Disease. My physician further advised that he was not aware of treatment options at an early stage of the disease. Only when the disease had progressed and movement of my fingers and my ability to straighten the fingers became restricted would I be referred to a hand surgeon for surgery. I also learnt from a neighbor, who was 20 years senior to me, that he to suffered from Dupuytren’s Disease and had undergone multiple hand surgeries. Following each surgery the disease reappeared. As a result he had permanent contractions and restrictions with some of his fingers. At this point I was concerned there was no medical treatment option I could undertake to slow or prevent the progression of this disease in my hands and eventually I would have to undergo hand surgery to remove the tissue and buildup of fascia. As a result I undertook some extensive online research and analysis on my own to attempt to determine whether any other treatment options were available. While I was unable to identify early treatment options available in Canada or the US I discovered an early stage treatment option for Dupuytren’s Disease in Europe. The treatment involved the application of radiation directly to the hands in an attempt to slow or stop the progress of this disease. After further research and discussions with my family physician I reached out to a clinic in Germany that offered the treatment. Following email exchanges including providing pictures of my hands and additional medical and personal information the clinic recommended an in- person consultation and examination. I travelled to Germany in November of 2013 and following a detailed consultation and examination with several physicians at the clinic I underwent a radiation treatment regime involving application of radiation daily to each hand over a five-day period. A follow-up repeat treatment was completed approximately three months later. The cost for the first round of treatment was approximately 1,000 euros and the second round cost was approximately 800 euros. While at the clinic I became aware that the clinic and the medical staff have treated hundreds of patients with Dupuytren’s Disease from Europe and throughout the world. I am now aware the treatment I underwent in Germany is available and offered in Canada. Set out below is a picture of my hands following examination at the German clinic with medical doctors and prior to commencing treatment. The markings on my hands note the progression of Dupuytren’s disease.

Following treatment, the side effects I encountered included some itchiness and dryness in my hands accompanied by redness. Since completing the treatment the nodules or lumps have not expanded nor have new lumps developed and I am approaching year seven following treatment. As well post treatment my hand flexibility and movement improved and I continue to have full use of my hands. In addition, the medical personnel also examined my feet and to my surprise noted early development of nodules forming on the instep area of both of my feet. This disease is like Dupuytren’s Disease but located on the feet and is called Ledderhose Disease. In 2017 I observed the nodules on my feet had grown and I was experiencing a burning sensation and pain in the arch area of my feet. Following email consultation, I again returned to the clinic in Germany that treated my hands and had the same radiation procedure performed on my feet. To date the nodules on both feet have not expanded and appear to be dormant. I have also learned that Dupuytren’s Disease in many cases is hereditary. As a result of my diagnosis and treatment my younger brother identified that he too suffers from the disease in his hands. He underwent early stage treatment similar to what I undertook.