Prevalence
Dupuytren’s contractures (Palmer fibromatosis) is a genetic hand disease that begins as a hard nodule (s) in the middle of the palm. It’s thought that this is a disease from Viking descent, and isolated to white men. However, this is not necessarily true. Scandinavian and Irish descent has a higher ethnic prevalence of Dupuytren’s, but the disease has crossed over into other races and ethnicities. As well as about 1/3 of people suffering from Dupuytren’s are females. Dupuytren’s is a very rare disease affecting 1-2% of the world’s population.
The disease is not fully understood, however, research is underway. Genetic predispositions are the focus of research and the most accepted cause. There is a very high rate of passing the gene to offspring. It’s believed Dupuytren’s has an auto-immune predisposition. It is also believed to be related to chronic illnesses such as; type 2 diabetes mellitus, epilepsy, barbituate addiction/use, chronic alcoholism, pulmonary tuberculosis, myocardial disease, reflex sympathetic dystrophy, and many others. Environmental activities, such as work causing rigorous friction to the hands, vibrations, heavy hand usage (rock climbers), are thought to cause Dupuytren’s.
These associated causes, both medical and environmental, have been found untrue. The person has to have the genetic predisposition. Dupuytren’s is a disease of the fifth, sixth, or seventh decade of life, which, many people may have chronic medical problems listed which makes it more coincidental.
Over time, the nodule(s) may become a hard cord under the skin, in the fascia tissue, following the path of a finger creating a contracture. Typically, the pinky and ring fingers are affected at first causing one or both of them to fold toward the palm and lock in that position. This makes it very difficult to do daily activities. The above picture is my hand in 2020. I first noticed the nodules in my left hand around 2017. I saw an orthopedist in 2018 who recommended hand therapy for stretching, splinting at night, and massage. As you can see, the pinky contracted pretty tight to my palm making it difficult to do certain things with that hand. For any donation considerations for ongoing research, please visit: https://dupuytrens.org.
Treatment:
I saw a hand specialist in early 2020 who recommended hand surgery with the goal of removing the cord causing the pinky to contract. Surgery was performed in September 2020.
This is post-op one week. The surgical incisions removed nodules and cords in various areas of my hand. With extensive occupational therapy, the pinky had decent extension. However….
The cord returned with a vengeance. Over time from September 2020 to late 2022, the pinky became contracted again. Due to my employment and COVID, I couldn’t get time off of work to have my finger repaired. So in January 2024, I had an office procedure done, where the surgeon injected Xiaflex directly into the cord, the medicine softens the cord. The following day I returned for breakage of the cord and needle aponeurotomy, which with a needle, the surgeon breaks up the cord to regain as much extension as possible. Following this procedure, I underwent more occupational therapy, wore a splint daily, as the deep skin tear wounds healed. Unfortunately, within 4 or so months, the contracture returned, along with new nodules in various areas of my palm. Some were extending into cords causing other fingers to show contractures.
This is my hand on January 10th, 2025, about 2 hours before reporting to the hospital for another surgery. There are multiple fingers contracted. Cords and nodules in various areas. The pinky is severely contracted. In preparations for this surgery, I lifted upper body weights 2/3 times per week to prevent as much muscle mass loss as possible. The surgical plan was to remove the ulnar (pinky) side cord, then use a skin graft from my upper arm. Occupational therapy, recovery, and time off from work and my active lifestyle went on for over 6 weeks. Unfortunately, the surgery wasn’t as successful as we had hoped and the contracture is forming again.
The top picture is my left bicep, the skin donor site. That bad-boy had 40 staples and 35 sutures. I’ll have a pretty good scar but, the area is healing pretty nice. The above pic is 4 days post-op. Full thickness at the pinky and palm, along with nodules removed in the middle of the palm with skin graft. Nodules removed from the ring and middle fingers. Unfortunately, the surgeon spent so much time on the pinky, the index and thumb couldn’t be worked on, therefore, in the near future those will be fixed.
As I’ve said, this surgery wasn’t as successful as we’d hoped for, so it’ll have to be done again. A full skin flap and external splinting with pins to keep the pinky extended until the skin heals is an early consideration. The skin graft will need to fully heal and mature before the next surgery on that area.
When Dupuytren’s is diagnosed early, massage, icing, padded gloves, stretching, splinting, may be of help. However, as there is no real prevention of the disease. Some people have excessive palm itching when the disease is considered “active.” Additional treatments include: needle aponeurotomy. Localized radiation therapy into the nodules and cords to prevent disease progression. There is a very short time frame for radiation therapy. A radiation oncologist must be consulted who will do measurements of contracted fingers. If more than about 10% contracted, the radiation is not recommended.
Radiation can be administered after surgery. I’ve had radiation to my right hand during the summer of 2024. I haven’t noticed a slow down in nodule development or cord extension. I have a pretty decent contracture to my pinky and ring fingers. By the way, I’m one of the super lucky ones, I have bilateral Dupuytren’s, and bilateral Ledderhose.
Ledderhose
Ledderhose and plantar fibromatosis are a benign foot condition where nodules develop on the sole of the foot. Plantar fibromatosis typically affects the middle of the foot’s underside. Ledderhose disease occurs on the underside of the foot arch. The two conditions are related, characterized by nodules, or lumps that can become painful, feels like a pebble is in your shoe. Treatments can include: orthotic inserts to relieve pressure and the sensation of walking on a pebble, steroid injections, surgical removal of the nodules, and radiation therapy to the nodules.
I was a heavy smoker, from about 1986-1999. I quit and began to walk then run. I became an ultra-runner where I participated in marathons, 50k’s, 50-milers, 100k’s, 100-milers, 24-hour races (yes run for 24 hours), and multi-day running events. I ran Boston marathon twice, qualified every year for about 10 years, but logistically, that’s a hard race to get to. I opened a running specialty store August 2008, quit my RN trauma ICU job March 2009.
Right around 2010, I discovered a hard nodule in the arch of my left foot. I didn’t know what it was, didn’t seen anyone for it. The nodule was there, didn’t cause pain, or contractures to my toes. Around 2012, I found a nodule in the arch of my right foot. Again, no pain, contractures, etc. I considered fibrosarcoma (cancerous tumor of the fibrous tissue) and decided to keep an eye on them. To this day, knock on wood, they are exactly the same as the day I found them.
Peyronie’s Disease
Peyronie’s disease, penile fibromatosis, is a plaque buildup in the tissue of a man’s penis, causing a bend or curvature in the penis. Affecting a very small percentage of men, this disease has beliefs from a traumatic cause. However, Peyronie’s is genetically linked, and considered a high prevalence (15%) for those with Dupuytren’s disease. Other links to Peyronie’s disease besides trauma to the penile tissue, prostatitis, high blood pressure, tobacco use, prostate surgery, certain medications; beta blockers, interferon, and Dilantin. Peyronie’s disease may affect black and Hispanic men, however whites have a higher prevalence.
Treatment options for Peyronie’s disease includes change any risk factors-controlling high blood pressure, weight loss, stop cigarette smoking. Medical treatments may initially be conservative with penis stretching exercises, creams, certain medications. For severe or painful cases, Xiaflex injections or surgery may need to occur. If there is any concern for Peyronie’s disease, see your family healthcare provider, or a urologist for definitive diagnosis and treatment.
Men, with Peyronie’s disease can lead a full sexually intimate life. There may need to be open communication with your partner regarding positioning, however, most men lead healthy sex lives. In regards to psychological concerns, Peyronie’s disease can be a cause for isolation, sexual dysfunction, anxiety, and withholding sexual activity. Be completely open and honest with your partner. In survey asking partners of men with Peyronie’s, if there were any negative sensations, arousals, feeling during intercourse, etc., reported. There were no differences in feeling or intimacy, or achieving orgasm by the man or partner (the article included male partners of men with Peyronie’s, also).
I do not have Peyronie’s, yet. I have the other two, so, I’m just waiting. I’ve been fully open with my wife regarding the prevalence. I don’t feel we’ll have any issues if Peyronie’s is in my future.
Please seek advice from your healthcare provider for any of the above medical conditions. This blog is to open the avenues of conversations.