It’s “the most common crippling hand disease that people have never heard of,” says Charles Eaton, executive director of the Dupuytren Research Group, which estimates that at least 10 million Americans have Dupuytren’s disease.
When problems begin, many with this condition mistakenly assume they have arthritis or tendinitis, or don’t notice the problem until their fingers begin to bend.
“It tends to progress very slowly,” Eaton says, adding that only about a fifth of patients with early signs of the disease develop severe bent fingers. In about 10 percent, the lumps go away, while the rest show no change or the bent toes aren’t severe enough to require intervention, he says.
Eaton’s group is recruiting people with and without Dupuytren’s disease into a study that will collect and analyze blood samples to discover a biomarker — one or more molecules unique to Dupuytren’s disease — that could help scientists design drugs for treatment. This would be a first in Dupuytren’s research, Eaton says.
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The disease is incurable, but there are non-invasive therapies as well as surgical treatment, which is usually reserved for patients with advanced disease. But even with treatment, symptoms often recur and can worsen 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 as both hands deteriorate again. “I have to be careful when picking up a bottle or thermos because I can’t open my fingers enough. I used to play a lot of golf, but now I have trouble holding the golf club.’
Gary Pess, hand surgeon and medical director of Central Jersey Hand Surgery in New Jersey, agrees that the condition can be life-changing. “It’s hard to do the simple things you love to do,” she says. “It’s hard to hold a baby or put your hand in your pocket. You can’t open your hand and grasp 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, increasing age (the likelihood of Dupuytren’s disease increases steadily after age 50), Scandinavian or Northern European ancestry, tobacco and alcohol use, use of anti-seizure medications, and diabetes. It occurs more often in men than in women.
Doctors usually recommend surgery if patients can’t pass the “table” test, meaning they can’t place their hands on the table with their palms facing down. But don’t wait until that happens to see a doctor, experts warn. “There’s a much better success rate when you treat early,” says Pess.
Keith Denkler, a plastic surgeon in Larkspur, Calif., 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 reverse its worst effects,” he says. “My philosophy is: Instead of waiting for things to get bad, do something simple.”
One way to do it yourself for a mild ailment is to pad, or mounting handles using pipe insulation or damping tape and using deeply padded gloves for tasks that require a heavy grip, such as lifting weights and trimming hedges.
If that doesn’t help, other early treatments include:
Needling. This approach involves inserting a needle through the skin to break the cords of tissue causing the contracture. May repeat if bending returns. There are no incisions and the procedure requires little physical therapy afterward. However, the practitioner must be careful not to damage the nerve or tendon.
Injection. Doctors inject an enzyme into the tight cords to try to soften and weaken them so they can break and allow the fingers to straighten. One product, clostridium histolyticum collagenase (sold as Xiaflex), has been approved by the Food and Drug Administration for this use. Some doctors recommend cortisone injections for early disease.
Extracorporeal shock wave therapy. Some studies suggest that it may be effective in reducing pain and slowing the progression of Dupuytren’s disease. “It works by angiogenesis, or the formation of new blood vessels,” says John L. Ferrell III, director of sports medicine for DC-based Regenerative Orthopedics and Sports Medicine. “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 poor. It seems to reduce pain and help slow the progression of the disease.”
One catch: While this therapy is FDA-approved for the treatment of other musculoskeletal conditions, it is still an “off-label” drug for Dupuytren’s disease and is not widely used to treat the condition.
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Surgery is the only treatment for advanced disease. This involves an incision to remove the affected tissue to straighten the fingers. Denkler says that the disease recurs within five years in up to 25 percent of patients who undergo invasive surgery.
“When you do surgery, you’re cutting out tissue, but it can regenerate,” he says. “Dupuytren’s is a scarring condition and surgery is scarring, so it can fail.”
Open surgery generally works better for more severe bends and takes longer, but it also has a higher rate of permanent complications, Eaton says, and patients can experience pain, swelling, nerve damage that causes numbness, circulation problems in the fingers, and stiffness in the hand.
And “if the problem comes back, the risk of complications from repeat surgery is even greater,” he adds. “Minimally invasive procedures have a much lower complication rate and a much faster recovery.”