Help us find the cure for Dupuytren disease
Welcome to my Fundraising page!
About 8 years ago I was first diagnosed with Dupuytrens Disease - a rare connective tissue disease. At this time I only had a nodule in the palm of my hand, my left hand which is also my dominant. The doctor told me to wait until my finger contracted and then come back. I was also told that this disease usually affects men between their 40s and 60s, and there is no pain associated with it. Well, here I was, female and 46, and I will tell you along with most anyone else who has it, there is pain associated with it. In the beginning it was the pressure on the nodule from holding onto a steering wheel while driving. Today it's so much more. So, what did I do? I went home and waited.
About 4 years later I was beginning to watch my ring finger contract little by little. I could still straighten my finger by itself if I put enough thought towards it, or I would just physically straighten it with my other hand.
I continued to watch my hand over the next 2 years, all the while continuing to search for answers. I was lucky enough to find a couple of Dupuytren support groups on Facebook and spent much of my time reading posts and learning about different treatment options other than surgery. Some alternative treatment options are Needle Aponeurotomy (NA), Xiaflex injections and even Radiation Therapy (RT) but there doesn't seem to be enough orthopedic hand doctors that know enough about them and/or they have mixed opinions about them.
After reading many stories of people having multiple surgeries and/or trying alternative treatments -- some successful and some not so successful where the contracture returns and is worse, I finally decided to give NA a try. I found a hand surgeon in Long Beach, sent him an email detailing my story along with pictures of my hand, and he replied I was most likely a candidate for NA. I made an appointment with him for a consult, and if he agreed after physically examining my hand, for NA. His diagnosis was a 40 degree contracture at the PIP joint, and he still agreed I was a candidate and he proceeded with the NA procedure. That was October 31, 2014.
The NA treatment was a fairly quick procedure with not too much pain involved other than the shots to numb my hand. The doctor manipulated my hand and finger and I was able to go home with a little bruising and swelling, but the BEST part of it was my finger was straight and I could actually lay my palm flat on flat surface! Yay!
Sad news! Within about 3 months, the contracture returned and I visited the doctor at the 6 month mark. Yes, my contracture had returned but was only at about 25 degrees. Doctor told me he could not perform the NA procedure again because he feared he might hit the nerve in my finger, and he told me my only choice at this point was surgery. Well, I have read many nightmare surgery stories because surgery just seems to progress the disease (although there are some true success stories) so I feel surgery is my absolute last resort.
Over the past 18 months, I have continued to watch the contracture get worse. I would estimate it is back at 40 degrees, and it seems to be affecting my middle finger and the palm of my hand is cupping. If I try to press my hand flat on a flat surface pretty much it's only the base of my palm and my finger tips that touch the surface. Think about dusting a table top and after you've passed your hand across the table the dust is still there with only a couple of streaks through it. It truly is the simple things like washing your hands & watching the soap end up in the sink because your palms don't touch or rubbing your dog's belly or giving a massage are pretty much out.
Again, I mention there is pain associated with this. My hands (and I say hands because last year I discovered a couple of nodules in my right hand which I have treated with RT) hurt all the time especially my left hand. They ache after a day at the office being on the computer and typing all day. They hurt after doing yard work or house work, and they even hurt when I sleep at night; pretty much anything. All I want is some relief which would be to actually stretch my hand out normal again. But want I want more is to find a cure!
As I come to the end of sharing my life story of how Dupuytren's Disease has affected me, please know that there are so many others (many with much more severe cases than mine) that share this disease and a couple of other associated diseases such as Ledderhose, Peyronies and Frozen Shoulder. Because the medical field has treated this as a "rare" disease there has not been very much research on how to effectively treat this disease or to Find a Cure, or even to determine what is actually causing it. That is why we need your help.
If you are touched by my story or know someone who is affected by this disease I would humbly ask that you help me reach my goal towards Finding the Cure for Dupuytren's Disease. If you are able, please make a donation or share this with others that may be able to help.
Thank you for reading my story and helping Find a Cure for Dupuytrens!
My sincerest thanks