My name is Jeff and I have Dupuytren's Diathesis. First off my Nationality is Filipino and Portuguese, not at all the typical demographic. Also no one else in my immediate or extended family has any form of this disease. My Dupuytrens started when I was in College. It started off as a small nodule that I thought was from excessive weight lifting. It gradually turned to a full contracture and I had my first surgery when I was 28. I am now 41 years old and have had multiple (six) surgeries on both hands and knuckles as well as my left foot for Ledderhose disease. I have an excellent surgeon at UCLA, Dr. Benheim who has performed all of my hand surgeries. My experience with treatment has ranged from splinting to needle aponeurotomy which only made my cords worse. I had to go in for the the surgery six months later. I am not your typical Dupuytren's patient and I am always some new intern's "case study". It seems that I hit the genetic lottery for this affliction. The only procedure that seems to work is invasive surgery which makes taking time off work for occupational therapy challenging at best. The "bright side" of being so young is that I seem to heal at an accelerated rate according to Dr. Benheim and my occupational therapist. Even at 41 I am the youngest patient in my Doctor's office and the only one not of European/Anglo descent. I hope that this sheds some light on this disease and this helps some of you out there. Feel free to ask me any questions.

Edited 04/06/13 00:57

Both hands and all the knuckles with the exception of my thumbs. The fingers that are affected the worst are my pinky and ring finger on my left hand. The right hand seems to be my middle finger and web of my thumb area that have the most disease. I have bilateral disease, but have only had the surgery performed by Dr. Spak (my podiatrist) on my left foot due to extreme pain. Inserts and custom orthotics did nothing for my case. For some reason the "lump" in my right foot doesn't cause any pain or numbness. I think that I will eventually have to have my left foot taken care of again as there are new nodules that have developed and are causing me discomfort when I walk or run. (My last surgery for my hands was in 2011 and I have only one surgery performed for my left foot in 2004).

Edited 04/04/13 01:09

I see an Occupational Therapist the day after my surgery so they can change my dressing and take measurements. My sutures are usually removed after 10 days or longer and a night splint is created for me at that time. There are variety of exercises that I do from scar massage to ultrasound, but they are more aggressive with my treatment at my request. There is also a great deal of stretching and couple of custom made splints in total. All in all I am usually in for 2-3 months of rehab after the invasive surgery. On a side note I am still able to live a highly active lifestyle, but any dreams of becoming a hand model are out the door.

Edited 04/09/13 21:58

I have not had any skin grafts yet, however I know they would take it from the area between my hip and buttock. This is the area that is always marked when I wake up. I was told that I would not be a good candidate for Xiaflex due to my extensive surgeries. Do you research on your surgeon and find an excellent occupational therapist would be my suggestions. The surgery is just the beginning and aftercare is almost equally important if not more. I have had all the Garrod's pads on both hands removed. Only my two pointer fingers on each hand have had any recurrence. So that is a small blessing.

Edited 04/06/13 00:45

Jeff,

With regard to your statement:
I have an excellent surgeon at UCLA, Dr. Benheim who has performed all of my hand surgeries. My experience with treatment has ranged from splinting to needle aponeurotomy which only made my cords worse. I had to go in for the the surgery six months later.

Can you tell me more about the needle aponeurotomy that you say was not successful... did Dr. Benheim perform it? what finger/joint was it done on and what was the degree of contraction.