26 Aug J. from Alberta
In early 2013, at the age of 46, I noticed a lump forming in the palm of my right hand near the base of my ring finger. In the spring of that year, I also noticed small lumps forming in my left hand as well. I was not able to get a concise diagnosis from my family physician until I did extensive research on the internet where I came to suspect that I had Dupuytren’s Disease. After bringing my research to my doctor, I was referred to the Bone & Joint Clinic where the diagnosis was confirmed by a hand surgeon. I was told by a hand surgeon that he did not recommend any preventative treatments and that there was little that could be done until the disease had progressed to the point where I needed surgery. He did mention that even with surgery there was a 50% chance of recurrence of the disease within five years in his experience and that the surgery had a long recovery time. This was a very frightening prospect. I was imagining the impact that losing dexterity of my hands would have on my career as a Professional Engineer and on my personal life, playing guitar or performing ordinary everyday tasks.
I was losing strength and feeling pain and sensitivity in my hands along with a crawling sensation in the palm of my hand. It was also changing at a rapid rate with the nodules growing and cords beginning to appear. It could also see that this was beginning to limit how far I could extend my fingers on both hands. This was very concerning to me. Through further research I was able to see that others had experienced the same symptoms. Through this research I came across the work of Dr. Seegenschmiedt in Hamburg. I learned that he had developed a radiation treatment regime that had a high rate of success in stopping the progression of the disease. I decided I did not want to take any chances and contacted Dr. Seegenschmiedt. Through my correspondence with him, I was able to determine that the symptoms I was having were all signs that the disease was in an active phase and that this was the optimum time to have success with radiation treatments. I was able to travel to Hamburg to have my first rounds of radiation in February of 2014. I experienced no side effects, other than dry skin and was seeing some improvements following the treatment. In May of 2014, as per the treatment protocol I returned to Hamburg for a second round of radiation treatments. Since that time, there has been no further progression of the disease in my hands.
In 2015, nodules in my feet became active and I was noticing the tingling and crawling feeling that was so prevalent in my hands. Thanks to the knowledge I had gained from Dr. Seegenschmiedt, I knew that this was Ledderhose Disease and that this was the perfect time to have radiation treatments performed on my feet to stop its progression. This time around I had more knowledge and had found that there were doctors performing this procedure in Canada. I had two rounds of radiation on both feet performed by Dr. Kurien at the Tom Baker Cancer Centre in Calgary in the last half of 2015. She was using the treatment protocols developed by Dr. Seegenschmiedt in Hamburg. This procedure was also effective in stopping the progression of the nodule formation in my feet.
I have since discovered that this disease has been present in my family on the Danish side of my family. In fact, my Grandfather had undergone hand surgery in his 70’s to correct his contracture which had severely limited the use of his hand. I also had an opportunity to meet a cousin of my father in Denmark who after his first surgery 10 years prior, was having his second surgery to correct the recurrence of contraction in one of his hands.
I am very fortunate to a be a naturally curious person and that I was able to research this myself to determine the treatment options. I feel that it is critical to ensure there is good information out there for individuals and medical professionals to make informed decisions in an expedient manner in order to ensure timely treatments and limit the damage the disease can cause. Therefore, I am proud to be an inaugural member of the Canadian Dupuytren Society and am glad to share my story to promote the education and awareness of Dupuytren’s Disease.