Help us find the cure for Dupuytren disease
Welcome to my Fundraising page!
Several years ago I noticed some of the tendons in my palms being more pronounced and some small nodules.Three years ago I saw a hand surgeon and was told it was dupuytrens. A word I had never heard of before. I was told there was no cure. At that time I had a 15 degree contracture in my right pinky pulling it towards my palm. This is a progressive genetic disease. I was told surgery was an option but not until it reached a 30 degree contracture. Why, because surgery can possibly stir up the disease. It's also likely to return in five years. He also said there is no pain with dupuytrens. Hmm, I thought that's what brought me here in the first place. Imagine cords in your hand as tight as banjo strings contracting your fingers.Well now three years later the contracture in that pinky is 45 degrees and now a cord to my ring finger. I've also developed cords in three fingers of my left hand. All three have contracted 3 to 5 degrees. In Germany radiation treatment is used in the early stages of this disease. This treatment has been slow to take off in the United States. Xiaflex and enzyme known to break up collagen, the primary cause of this disease, has also been approved. There is also a process called needle fasciotomy . It doesn't remove the tissue and has a high recurrence rate. Those inflicted severely early in life may end up with two fists, unable to open their hands. I am now finding it very hard to do work around the house, as it causes my hands to ache. I have given up riding a motor cycle as the clutch and brake irritate the cords. One thing I learned is, because it's a rare disease, not many doctors really know much about it. Some of the procedures I mention above are only available by a handful of Drs. The dupuytrens foundation is now starting a study to test thousands with dupuytrens. This is to try and find a bio marker to help lead to a cure. I don't have a lot of friends with lots of money. I recall when motorcycling that many rides were to raise money for a cause. This would be a good cause for a charity ride. If any groups were interested.
Just a small donation will go a long way to helping me meet my goal for helping to find the cure.
Thank you in advance for your kindness.