toby last edited by toby
Greetings All You Beautiful People.
The Dupuytren's Foundation can use our help.
What is Dupuytren's Disease?
Dupuytren disease is the most common crippling hand condition that people have never heard of. It affects at least ten million Americans, making their fingers permanently bent, sometimes severely. Why isn’t it more commonly known? Dupuytren contracture makes the fingers bent as if relaxed, not obvious unless the person tries to open their hand. It progresses slowly, usually doesn’t hurt, and mostly affects seniors. It’s often mistaken for arthritis or tendinitis.
Why is it important?
Bent fingers are only part of the picture. Dupuytren disease is a systemic problem. It can affect the hands (Dupuytren contracture, Garrod knuckle pads) and the feet (Ledderhose Disease). Developing one of these increases risk of developing others. It is a serious health issue. People with Dupuytren contracture have a greater risk for cardiovascular disease, several types of cancer, and early death – for reasons unknown. There is no prevention and no cure.
Who is affected?
Anyone can develop Dupuytren disease. Some groups have a higher risk. Dupuytren disease often runs in families. It’s genetic, but can skip several generations. It’s most common in Caucasians. In most, it appears in senior years – in previously normal hands. An estimated ten million Americans (thirty million worldwide) have signs of Dupuytren disease. Dupuytren celebrities include politicians Ronald Reagan, Margaret Thatcher, Mitt Romney, actor Paul Newman, singer Frank Sinatra, comedians Bill Murray, Chelsea Handler, and many, many others – in all walks of life.
There is also some evidence that Rock Jocks (and others using "power grips") may be more likely to experience more severe/aggressive forms. Bummer, eh? Dr. Eaton had some rock climber related articles that may be of particular interest to our community.
What is the Dupuytren Research Group?
We are an independent 501(c)(3) public charity established in 2008. Our mission is to find a cure for Dupuytren Disease as rapidly and efficiently as possible. All our board members are intensely focused on this goal because we are either hand surgeons who have seen too many problems with Dupuytren Disease, have Dupuytren Disease ourselves, or both. Our membership represents all 50 states and spans 70 countries. We provide patient support, host academic conferences, and author academic publications. Our flagship effort is the International Dupuytren Data Bank (IDDB).
International Dupuytren Data Bank (IDDB)
The IDDB has three stages:
Recruit, enroll, and survey patients across the globe through secure online forms to collect information about their disease, its progress, and other medical factors.
On reaching enrollment and funding goals, blood tests of enrollees will be collected to analyze DNA and other serum biomarkers.
On reaching target numbers for phase 1 and 2, survey and laboratory data will be correlated to identify molecular targets for drug development.
How Can We Help?
You don’t have to have Dupuytren disease to enroll. We need comparison data from people without Dupuytren disease. Also, people with Peyronie Disease, Ledderhose Disease, or Frozen Shoulder should enroll – whether or not they have Dupuytren disease.
Spread the Word
We need 10,000 people with Dupuytren disease and 1000 without Dupuytren disease to complete the survey and blood collection phases. The sooner we gather the information we need, the faster we can move toward a cure.
The Foundation has their 10K but short on the 1K control group.
- I would also ask those with financial resources to spare and/or needing end of year tax deductions to consider donating to the Dupuytren's Foundation.
Those interested in a deeper dive
Thank you for your consideration.