Why does Dupuytren need advocacy?
- Dupuytren patients need better treatment
- Progress in treatment needs research
- Research needs funding
- Funding needs Awareness
- Awareness needs Advocacy
What do people need to know about Dupuytren?
- Dupuytren needs better treatment. People with severe Dupuytren face the possibility of becoming permanently crippled despite a lifetime of operations and reoperations. The best doctors have to offer may simply not be enough. Failed Dupuytren surgery is the most common reason for non-emergency finger amputation – more common than the next two most common reasons combined.
- Dupuytren is common. If the earliest signs of Dupuytren are included, as many as 12 million Americans age 35 and older have Dupuytren disease. An estimated one half to three-quarters of a million Americans have the severe form of Dupuytren disease.
- Dupuytren is more than just bent fingers. Dupuytren can affect hand dexterity before fingers become bent, and this may persist after corrective procedures. Dupuytren is only one part of Dupuytren Spectrum Diseases, which include Dupuytren disease (of the palms and palm side of the fingers), knuckle pads (lumps on the back of the finger joints), Ledderhose disease (lumps in the arch of the foot), Peyronie disease (lumps and contractures of the penis), and frozen shoulder (painful stiff shoulder, but not a rotator cuff problem).
- Dupuytren impacts overall health. People with severe Dupuytren are at greater risk for cancers, other medical diagnoses, and shortened lifespans.
- Better Dupuytren treatments might also help non-Dupuytren diseases. Dupuytren is a fibrosis and has similar biology to other incurable fibrotic diseases such as pulmonary fibrosis (lungs), cirrhosis (liver), renal interstitial fibrosis (kidneys), scleroderma (skin and internal organs), and arteriosclerosis (blood vessels). Drugs which work for Dupuytren might help some of these conditions or at the least, help future research for better treatment of these diseases.
- Dupuytren research is underfunded. There is little awareness of Dupuytren disease at the US National Institutes of Health or the Centers for Disease Control. Neither of these federal organizations currently offer Dupuytren-specific research grants. Research to evaluate preventive Dupuytren medicines needs a blood test. Research on new medicines is usually funded by the pharmaceutical industry, but pharma won’t be interested until a blood test is available.
- We need a blood test. Because Dupuytren progression is slow and unpredictable, there’s no practical and affordable way to test preventive medicines. This is the goal of the Dupuytren Research Group’s International Dupuytren Data Bank research: the IDDB. The biggest obstacle to research for a cure is lack of a Dupuytren blood test. That’s why it’s our biggest priority.
Who needs to know about Dupuytren disease?
Everyone! It’s a large underserved public health problem. The people who really need to know are those who might influence funding for nonprofit medical research such as politicians, state and federal health officials, fund managers, and foundation program officers.
What do I say?
If you or a family member has Dupuytren disease, tell your story. Show people your hands. It doesn’t matter whether it’s a little problem or a big problem for you right now. What matters is for people to hear the word Dupuytren. Say Dupuytren. It’s pronounced DOOP a tren (rhymes with “stupid trend”). It’s a strange sounding word, but you’ll get used to it just as you did with Alzheimer, Heimlich, and other odd medical names you’ve learned.
If you talk with someone in a funding position, tell them that Dupuytren has fallen through the cracks of traditional routes for funding medical research. Funding Dupuytren research is an opportunity to make a profound difference in the lives of millions worldwide. Encourage them to contact the Dupuytren Research Group or email an introduction to connect them with the Dupuytren Research Group through progress@Dupuytrens.orgLearn more about Dupuytren