Dupuytren Disease: A hand condition that affects millions, but is still new to many

Editor's note:  AARP Florida is sharing information with our readers about Dupuytren disease, a condition that affects millions of Americans, including mostly older Americans. This disease is not well known yet, but it can be painful and limit some daily activities.  This blog was provided by Dr. Charles Eaton, a Florida physician who is executive director of the Dupuytren Research Group, a nonprofit organization advocating on this issue.

What is Dupuytren disease?
Dupuytren disease makes fingers permanently bent. It's the most common crippling hand condition that you've never heard of. Dupuytren is pronounced "DOO pa tren" (rhymes with “tuba trend"). Early on, it can be painful and make the hand awkward to use. Early Dupuytren is often mistaken for callus, arthritis, or tendinitis. Over time, fingers become permanently bent, and affects normal activities - writing, typing, hand-related sports and exercise, playing a musical instrument, or using hand tools. People poke their nose washing their face or get fingers caught in pockets. The hand can eventually look like the person has had a stroke.

How common is it?
Dupuytren affects at least ten million Americans, mostly seniors. Most people have mild or early disease. Many don't know what they have.

What is it from?
The biggest risk is having a parent or sibling with Dupuytren. Children of an affected parent have a one in four chance of developing it as an adult. Dupuytren often runs in families but can skip several generations. One-fourth of Dupuytren patients don't know anyone in their family with it. Genetics are only part of the picture. Dupuytren involves the biology of aging, gender, inflammation, and responses to physical forces and injuries. It's uncommon under age 40 but increasingly common with age. Most don't seek treatment until their mid-50s or older. Overall, Dupuytren develops earlier in men, so overall it's more common in men. It's most common in Caucasians, for whom one in four men and one in ten women have some Dupuytren by age 70. Minor risk factors are chronic heavy smoking, heavy drinking, severe diabetes, and heavy manual labor. Dupuytren risk isn't known to be affected by nutrition or by nutritional supplements.

How is Dupuytren treated?
There are office and operating room procedures for Dupuytren, but only for bent fingers. Doctors consider joint angles, prior treatment, and patient preference when recommending treatment. Most people do well with procedures, but results are unpredictable and often temporary. Repeat treatments tend to be riskier and less effective. People with aggressive Dupuytren risk becoming disabled despite all available treatment.

What else?
Hands are not the only problem, just the most visible. Dupuytren can involve the shoulders (frozen shoulder), feet (Ledderhose disease) and penis (Peyronie disease). Dupuytren patients have a greater risk of shortened lives, other medical conditions, and cancer. Advances in Dupuytren research may help research for other diseases with similar biology, including lung fibrosis, liver fibrosis, kidney fibrosis, scleroderma, and cardiovascular disease.

What progress is being made?
There are new procedures to straighten bent fingers, but no way yet to test preventive treatments for Dupuytren. Dupuytren is a chronic disease. Chronic disease research relies on biomarker tests. Researchers need a Dupuytren biomarker blood test to develop preventive treatments. The nonprofit Dupuytren Research Group is conducting research to develop a Dupuytren blood test.

You can enroll in this free research study at https://dupuytrens.org/enroll-in-the-iddb/

If you are interested in supporting the organization, donations can be made at https://dupuytrens.org/donate/.

Dr. Charles Eaton is a hand surgeon and Executive Director of the Dupuytren Research Group