How to deal with Dupuytren’s disease, a crippling hand condition

How to deal with Dupuytren’s disease, a crippling hand condition

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Fifteen years ago, Jack Schultz first noticed several of his fingers curling inward toward the palm of his hand. Schultz, 75, of Columbia Station, Ohio, a retired plastics company manager, was confused. “What is that?” he recalls asking his doctor. “And can you fix it?”

The doctor knew what it was about: Dupuytren’s disease (also known as Dupuytren’s contracture), a deformity of the hand that usually takes years to progress and often begins with lumps or bumps, which are sometimes painful, in the connective tissue layer under the skin on the palm. The nodules may develop into cords that pull one or more fingers into a bent position, often those farthest from the thumb, such as the ring finger and little finger.

It’s “the most common hand injury that people have never heard of,” says Charles Eaton, CEO Dupuytren Research Groupwhich estimates that at least 10 million Americans have Dupuytren’s disease.

When problems begin, many with the condition mistakenly assume they have arthritis or tendinitis or don’t notice the problem until their toes begin to bend.

“It progresses very slowly,” says Eaton, adding that only about a fifth of those with early signs of the disease will develop severely bent fingers. In about 10 percent, the bumps will disappear, while the rest will experience no change or the bent toes will not be severe enough to require intervention, he says.

Eaton’s group is enrolling people with and without Dupuytren’s disease for a study that will collect and analyze blood samples to detect a biomarker — one or more molecules unique to Dupuytren’s disease — that could help scientists design drugs to treat it. 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 treatments, which are usually reserved for those with advanced disease. But even with treatment, symptoms often recur and can impair quality of life.

“I can drive, but I have a problem holding things,” says Schultz, who has had five surgeries — four on his left arm, one on his right — and may need two more as both arms deteriorate again. “I have to be careful when picking up a bottle or a thermos because I can’t spread my fingers enough. I used to play a lot of golf, but now I have trouble holding the golf club.”

Gary Pess, a 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,” 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 that big. If you are an artist, a pianist, a surgeon, it will hinder your career.”

Risk factors include a family history of the disease, increasing age (the chances of developing Dupuytren’s disease increase 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 cannot pass the “table” test, that is, when they cannot place their hands on the table with the palms facing down. But don’t wait for this to happen before you see a doctor, experts warn. “There’s a much better success rate if you’re treated 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 prevent its worst effects,” he says. “My philosophy is: instead of waiting for it to get bad, do something simple.”

One do-it-yourself approach for mild illness is lining, or building handles with pipe insulation or cushioning 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:

with a needle. The approach involves inserting a needle through the skin to break up the strands of tissue that are causing the contracture. It can be repeated if the bending returns. There are no incisions, and the procedure requires little physical therapy afterward. However, the doctor should be careful not to damage the nerve or tendon.

Injections. Doctors inject an enzyme into the strained ligaments to try to soften and weaken them so they can break and allow the toes to straighten. One product, clostridium histolyticum collagenase (marketed 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 propose can 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 Regenerative Orthopedics and Sports Medicine in Washington. “If we can treat Dupuytren’s disease at its earliest stage, we can increase blood flow to this area, where there is poor blood supply. This appears to reduce pain and slow the progression of the disease.”

One catch: Although the therapy is FDA-approved to treat other musculoskeletal conditions, it’s still an off-label drug for Dupuytren’s disease and 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 toes. Denkler says the disease recurs within five years in up to 25 percent of patients who have invasive surgery.

“When you do surgery, you’re cutting out tissue, but it can re-form,” he says. “Dupuytren’s is a scarring condition, and surgery is a scarring procedure, so there can be failure.”

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, problems with circulation in the finger, and stiffness in the arm.

And “if the problem returns, the risk of complications from repeated surgery is even greater,” he adds. “Minimally invasive procedures have a much lower complication rate and a much faster recovery.”

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