New to this site, and fascinated to find it - given how I have been called a Zebra of different stripes from the many doctors I have seen. For the record, I have had many of the classical symptoms of this disease going back to when I was about 20 years old. From my understanding, this is rare. However, my situation then was far less problematic & serious than now (current age 51). I am male, Northern European descent (Dad was always proud of our "Viking Blood"), & live in Central Virginia. I have 14 uncles and 5 aunts from both sides - no history whatsoever in our family of anyone having any of what I have (I understand this is a hereditary disease). I'll go into more detail as needed, but I have Keloids (body makes too much scar tissue) and what I understand is a very aggressive form of Dupuytren's Diathesis Disease (feet - Ledderhose?; Peyronie's, knuckle pads, nodules in palms and feet, and significant contractures in both hands - right pinkie already tucked almost to my palm). To add a bit of spice, I have had severe, almost debilitating pain in my Keloids (Oxycontin for years) until I found Dr. Grevelink in Boston for injections and pulse dye laser treatments about 5 years ago. I still have severe pain in my hands and feet (nodules mostly, but knuckle pads and fingers also), and also signifcant joint pain in general. Still require narcotic pain medication due to severity of the constant pain, but no longer use Oxycontin. My wife found a diagnosis of Polyfibromotosis, and we have emailed back and forth with other doctors. I saw Dr. Hurst at SUNY Stony Point, Long Island, had an appointment with Dr. Eaton for NA until my local orthopedist told me he could now do it because Dr Eaton had trained their practice. NA went terrible, made things worse. Suggested I have Radiation Therapy, that too made things worse and they quit that after 6 of the 10 treatments. If anyone interested I'll go into more detail, but time to leave to watch football. I will check back.

Edited 10/17/10 18:45