Dupuytren's Foundation



  • 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:

    1. Recruit, enroll, and survey patients across the globe through secure online forms to collect information about their disease, its progress, and other medical factors.

    2. On reaching enrollment and funding goals, blood tests of enrollees will be collected to analyze DNA and other serum biomarkers.

    3. 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?

    1. Enroll in the IDDB

      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.

    2. 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.

    1. 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. 🐕



  • Both my then wife and I developed Dupuytren's syndrome about 30 years ago. She had surgery, which fixed it for her. I just kept stretching that little finger backwards several times a day and, 30 years on, it's still fine. Won't quite straighten, but no problems.



  • @David-Harris said in Charitable Giving - Dupuytren's Foundation:

    Both my then wife and I developed Dupuytren's syndrome about 30 years ago. She had surgery, which fixed it for her. I just kept stretching that little finger backwards several times a day and, 30 years on, it's still fine. Won't quite straighten, but no problems.

    Luck you. Seriously. Mild, minimally aggressive form and minimal negative impact. Alas, some of us are not so lucky.

    IMG_6956dup04.jpg

    IMG_6954dup01.jpg

    IMG_6955dup02.jpg

    Took a hard fall onto concrete a couple months back and activated the "rapid healing" gene. Maybe a selective advantage for Vikings of yore injured during rape and pillage raids since they typically did not live long enough for the contractures to hit before departing for Valhalla. Now I'm looking at some nodules in my pinky as well. Boo hiss!!

    Middle finger has been operated on previously but genes are genes so only temporary fix. The bar for a "successful outcome" is to not need another operation on same finger for five years. Something like half meet that bar. The operation stimulated the "rapid healing" gene and re-contracture began soon thereafter, spreading to involve index and ring, which are in queue for another fasciotomy.

    Had a better outcome with my right ring finger which at the time was in far worse shape than the left middle. Fasciotomy basically involves making a "Z" incision, filleting back the skin, and then painstakenly removing the offending fascia before stiching things back up. Hopefully without nicking any nerves. And hopefully with minimal resulting scar tissue, which negatively impacts outcomes of future fasciotomies.

    20160424_0001dupzcut.jpg

    Then they put a pin in the knuckle joint to keep from returning to the "memory position" and hold the finger straight for a couple weeks. This is undesirable from my experience because that joint will then be forever stiff, comparatively. Probably going to need some pins in my left thanks to Covid pushing non life threatening procedures to the back of the line the past few months. No space at the inn, so to speak. Local hospital also just repurposed another out patient operating room to Covid, leaving only one for non Covid stuff like heart surgeries. Hopefully I don't get bumped.

    20160424_0003duprpin.jpg

    Present day. Made it five years on this one.

    IMG_6959duprightring.jpg

    Yeah, I have it in my feet too. Dupuytren's is not going to kill you but it sure can mess with your quality of life. I am a private person when it comes to the 'Net and have a lot of insecurities about posting this - I'll never be hired again - but at least now you know why I'm a "gaper". I'd otherwise envisioned craggin', hiking & backpacking on into my sixties and seventies.

    TMI??



  • Ledderhose? I wonder how that name got chosen...

    That long cut.... jeezus! That looks like something I'd definitely need to be knocked out for, and a mitt over my hand to keep me from seeing it until the cut was completely healed over.



  • @toby Shit!

    Yeah, given what you've said, I guess I am thankful to be lucky. One very slightly curved pinky that, even after almost 35 years, doesn't interfere with anything.

    Sorry to hear about your struggles with it.



  • Haven't heard from the Boss Man and suspected something...Sorry for the pain. Hang tough.



  • @LynneLeicht Yeah, easy for me to say. Sorry. My prayers are with you, Friend. Did you get the El Cap T shirt?



  • @LynneLeicht I aslo have inherited the Norwegian Claw and worse on my right hand, my picking, strumming hand. And like many, fortunate to not have severe condition ala Toby.

    Left hand just started to get tiny knots but much smaller than right hand and hope it stays that way as my left hand does all the intricate guitar and ukelele patterns chord shapes.

    @toby hope you heal up well and get a happier new year


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