It is “the most common disabling hand condition that people have never heard of,” says Charles Eaton, executive director of the Dupuytren Research Groupwho estimates that at least 10 million Americans have Dupuytren’s disease.
When the problems start, many people with the condition mistakenly assume that they have arthritis or tendinitis, or that they don’t notice a problem until their fingers start to bend.
“It tends to progress very slowly,” Eaton says, adding that only about a fifth of people with early signs of the condition will develop severely bent fingers. In about 10 percent of cases, the lumps will go away, while the rest will show no change, or the bent fingers won’t be severe enough to require intervention, he says.
Eaton’s group is register people with and without Dupuytren for a study that will collect and analyze blood samples to discover a biomarker – one or more molecules unique to Dupuytren – that could help scientists design drugs to treat it. This would be a first in Dupuytren research, Eaton said.
The disease is incurable, but there are non-invasive therapies as well as surgical treatments, the latter usually reserved for people with advanced disease. But even with treatment, symptoms often return and can affect quality of life.
“I can drive, but I have trouble holding things,” says Schultz, who has had five surgeries – four on his left hand, one on his right – and may need two more because his two hands worsen again. “I have to be careful when I pick up a bottle or a thermos because I can’t open my fingers wide enough. Before, I used to play a lot of golf, but now I find it difficult to hold a golf club.
Gary Pess, hand surgeon and medical director of Central Jersey Hand Surgery in New Jersey, agrees the condition can be life-changing. “It’s hard to do the simple things you love to do,” he says. “It’s hard to hold a child or put your hand in your pocket. You can’t open your hand to grab something big. If you are an artist, a pianist, a surgeon, it will interfere with your career.
Risk factors include a family history of the disease, age (the chances of developing Dupuytren’s disease increase steadily after age 50), Scandinavian or Northern European ancestry, tobacco and alcohol use, use of antiepileptic drugs and diabetes. It occurs more frequently in men than in women.
Doctors usually recommend surgery if patients don’t pass the “tabletop” test, which is when they can’t lay their hands flat on a table palms down. But don’t wait for that to happen before seeing a doctor, experts warn. “The success rate is much better when you treat early,” says Pess.
Keith Denkler, a Larkspur, Calif., plastic surgeon who estimates he’s treated about 10,000 Dupuytren’s fingers over the years, agrees. “We can’t cure it, but we can improve hand function and prevent its worst effects,” he says. “My philosophy is this: instead of waiting for things to go wrong, do something simple.”
A do-it-yourself approach for mild illnesses is to padding, or construct handles with pipe insulation or duct tape, and use deeply padded gloves for tasks that require a heavy grip, such as weight lifting and hedge trimming.
If that doesn’t help, other early treatments include:
Referral. The approach involves inserting a needle through the skin to sever the cords of tissue causing the contracture. It can be repeated if the flexion returns. There are no incisions and the procedure requires little physical therapy afterwards. However, the practitioner must be careful not to damage a nerve or a tendon.
Injections. Doctors inject an enzyme into the strained strings to try to soften and weaken them so they can be broken and allow the fingers to straighten. One product, collagenase from Clostridium histolyticum (marketed as Xiaflex), has been approved by the Food and Drug Administration for this use. Some doctors recommend cortisone injections for the early stages of the disease.
Extracorporeal shock wave therapy. Some studies to suggest it may be effective in reducing pain and slowing the progression of Dupuytren’s disease. “It works through angiogenesis, or the creation of new blood vessels,” says John L. Ferrell III, director of sports medicine for regenerative orthopedics and sports medicine at DC. “If we are able to treat Dupuytren’s disease at its earliest stage, we can increase blood flow to that area, where the blood supply is low. This appears to decrease pain and help slow disease progression.
One catch: Although the therapy is FDA-approved for the treatment of other musculoskeletal conditions, it is still an “off-label” remedy for Dupuytren’s disease and not widely used to treat love.
Operation is the only treatment for advanced disease. It involves an incision to remove the affected tissue to straighten the fingers. Denkler says the disease recurs within five years in up to 25% of patients who undergo invasive surgery.
“When you do surgery, you cut the tissue, but it can reform,” he says. “Dupuytren’s disease is a scarring disease, and surgery is a scarring procedure, so there may be failure.”
Open surgery generally works better for more severe curves and lasts longer, but it also has a higher rate of permanent complications, Eaton says, and patients may experience pain, swelling, nerve damage that causes numbness. , finger circulation problems and hand stiffness.
And “if the problem returns, the risks of complications due to a new surgery are even greater”, he adds. “Minimally invasive procedures have a much lower complication rate and much faster recovery.”