The ‘most common disabling hand condition’ you’ve never heard of

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Fifteen years ago, Jack Schultz first noticed that several of his fingers were curling into his palm. Schultz, 75, of Columbia Station, Ohio, a retired manager of a plastics company, was stumped. “What is this?” he remembers asking his doctor. “And can you fix it?”

The doctor knew what it was: Dupuytren’s disease (also known as Dupuytren’s contracture), a hand deformity that often takes years to progress and often begins with sometimes painful lumps or nodules on the upper of connective tissue under the skin on the palm. The bumps can become cords that pull one or more fingers into a bent position, often the ones furthest from the thumb, such as the ring finger and little finger.

It’s “the most common disabling hand condition 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.

When problems start, many people with the condition mistakenly assume they have arthritis or tendonitis, or don’t notice the 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 disease will develop severely bent fingers. In about 10 percent, the bumps will go away, while the rest will experience no change, or the bent fingers won’t be severe enough to require intervention, she says.

Eaton’s group is enrolling people with and without Dupuytren’s for a study that will collect and analyze blood samples to discover a biomarker, one or more molecules unique to Dupuytren’s, that could help scientists design drugs to treat it. This would be the first time in Dupuytren’s research, Eaton says.

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The disease is incurable, but there are non-invasive therapies and surgical treatments, the latter generally reserved for those 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 both hands are getting worse again. “I have to be careful when picking up a bottle or thermos because I can’t open my fingers wide enough. I used to play golf a lot, but now I have trouble holding a 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 to do,” he says. “It’s hard to hold a child or put your hand in your pocket. You cannot open your hand to grab something that is 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, older age (the chances of developing Dupuytren’s steadily increase after age 50), Scandinavian or Northern European ancestry, tobacco and alcohol use, use of anti-seizure medications, and diabetes. It occurs more commonly in men than in women.

Doctors generally recommend surgery if patients cannot pass the “table” test, that is, when they cannot rest their hands on a table with their palms facing down. But don’t wait for this to happen to see a doctor, experts warn. “There is a much better success rate when it is treated early,” says Pess.

Keith Denkler, a Larkspur, Calif.-based plastic surgeon who estimates he’s treated some 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 go bad, do something simple.”

A do-it-yourself approach to mild illness is filling, or build handles out of pipe insulation or padded tape, and wear heavily 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:

puncture The approach involves inserting a needle through the skin to break the cords of tissue causing the contracture. It can be repeated if it bends again. There are no incisions and the procedure requires little subsequent physical therapy. However, the doctor must be careful not to damage a nerve or tendon.

injections. Doctors inject an enzyme into the tight strings to try to soften and weaken them so they can break and allow the fingers to stretch. 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 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 by creating the formation of new blood vessels,” says John L. Ferrell III, director of sports medicine at 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 in this area, where the blood supply is poor. This appears to decrease pain and help slow the progression of the disease.”

One problem: Although the therapy is FDA-approved for the treatment of other musculoskeletal conditions, it remains an “off-label” remedy for Dupuytren’s disease and is not widely used to treat the condition.

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Surgery it is the only treatment for advanced disease. This involves an incision to remove the affected tissue to straighten the fingers. Denkler says the disease returns within five years in up to 25 percent of patients who have invasive surgery.

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

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, circulation problems in the finger and stiffness in the hand.

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

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