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Help us find the cure for Dupuytren disease
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I have Duputyren's disease and their is no cure. It will get progressively worse and I fear that when I am old I will no longer have the use of my hand.
The first signs of the disease presented themselves when I was about 27 years old, two large bumps formed on my middle finger on each hand. I didn't think much of it except damn when I would him my knuckle on something, or knock on a door the pain was terrible. I didn't do anything about it until a year or so later when a large bump formed under my pinky and it was a little painful so this led me to the first ortho doctor, this is in 1998. I think he did xrays but then told me he believed I had tendon tumors and that most are benign there is a slight chance of cancer. I was like ok just take them out of me. He performed surgery and removed the nodule from my left middle finger and the nodule on my left hand. I wasn't going to mess with the right unless it turned out this something was bad. That first surgery I was in shock at what my hand and finger looked like it was like out of a horror movie. So results come back he said it was a benign tendon tumors. So I left the right hand alone.
My DD has always hurt and each dr I saw has insisted that it doesn't. Something to the affect "it is in your head". Around 2002 I noticed that I had more nodules and a very thick palm, so I went to a hand dr who handed me a pamphlet about dupuytren's and said ask your family. I went right to my mom and low and behold she said oh I have that but mine doesn't look anything like yours. She had no hard nodules she just had some thickening. So he gave me a cortisone shot and things were ok for a little while. Then in 2003 I had a complete hysterectomy and in 2004 my hand started getting worse. I failed the table top exercise and my middle finger and ring finger were pulling pretty severely. I also formed nodules in my ring finger and pinky finger (the nodule in my middle finger never came back) So I lived with it for awhile and by 2007 I needed to do something so surgery #2, it looked just as Frankenstein as the first one he removed the nodules and cords and the nodules in both fingers. I did physical therapy and wore a splint for a while but 2 years later it was back with a vengeance. The pain started getting worse and I resigned myself to not do anything else because I did not want to anger it further.
About a year ago it was becoming almost too painful for me to pick things up and thought it was time for the Xilaflex injection. I saw a hand surgeon and had that done June 2016. He had very little bedside manner and I did not react well at all to the Xilaflex. The injection hurt very badly and I was unable to use my hand at all for 3 days. I also bruised from my wrist all the way up to my arm pit. My lymph nodes were swollen and bruised for over 2 weeks. My hand was very straight though so I did like the results. However, I can already feel new cords or cords that were hidden by the thick cord that was treated. My ring finger knuckle has really flared up and is causing a lot of pain but for the most part I'm satisfied with the initial outcome. Now comes my fear that this procedure was only a band-aid and the DD will be angry yet again and come back and make my hand rendered useless. This is why I am turning to the possibility of radiation therapy. I go for my first consultation with Dr. Bajaj tomorrow and I am looking forward to what he has to say and how I can take steps to enjoy the results of the Xilaflex. I will update as my journey continues. I am thankful that it has not affected my right hand and I only have to deal with the garrod's pads on that hand.
I had my xilaflex injection on June 6th and it a lot worse than I thought it would be. Manipulation is June 9th and I can't even begin to think of how that is going to turn out. I'm in a lot of pain now my entire arm is bruised an I need to constantly keep it elevated. I've had a previous surgery 6 years ago and think the pain is just as bad. At least I was prepared for the aftermath so far surgery. I'm trying to stay positive and look forward to the end results of this treatment.
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.