WORLD WIDE DUPUYTREN'S SUPPORT

Available 24/7

Welcome to our website: www.Dupuytrens.Club

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What is Dupuytren's Disease?    

It is  an incurable disease of the connective tissue of the hands, feet and penis

Dupuytren's, Ledderhose & Peyronies

Worldwide List of Radiation Oncologists who treat our disease

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DART : A Facebook support forum for Dupuytren's and Ledderhose

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 DART: Dupuytren's Advocates for Radiation Therapy. A Facebook group that aims to serve the needs of the newly diagnosed as well as those who've already gone from diagnosis to treatment.  This is a group of real people that are finding their disease goes into remission when having low dose radiation therapy(RT )


Join DART

Why use Low Dose Radiation Therapy?

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Low dose radiation therapy is used to stop the progression of the disease.  It is appx 80% effective. With no cure for our disease, this seems to be one of the best options for stopping the disease from spreading

SUPPORT

What to expect with Low Dose Radiation Therapy

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Low Dose radiation therapy is completely non-invasive.  It's as simple as getting a x-ray.  Your Radiation Oncologist (RO), will mark up your hands/feet (they call it mapping), the team that delivers your radiation will make a mold of your hand or foot, and when ready for treatment they will typically place the hand or foot into the mold and design a shield so that the RT will deliver in the exact spot needed, they will then typically apply a piece of bolus (sort of wet fabric) over the site.  The will ask you to stay still and tell you when the RT begins and ends. It is typically under 1 minute.  The standard treatment is 5 days, 3 grays a day and a waiting period of 8-12 weeks and then another 5 days, 3 grays a day.  That's it!

Who Treats Ledderhose Disease? (plantar fibromatosis)

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  •  Radiation oncologists are specialists who treat both Ledderhose with low dose radiation therapy.  Radiatiotherapy provides much needed relief from pain for most patients. This shows the most promising statistics of halting the disease, upwards of 80%.  RT is totally non-invasive, it takes less than 1 minute to deliver the dose and requires no needles or knives. Its a painless as a dental xray 
  • Podiatrists treat Ledderhose disease mainly by modifying footwear, providing custom orthotics and in some cases  cortisone injections. Cryosurgery is offered by a few podiatrists. It is a  minimally invasive procedure that does not remove the nodule, rather it aims to kill the nerves around the nodule to eliminate pain. Cryosurgery has not proven to be very effective with our members.  Lastly and newest, is Vitrase (hyaluronidase injection).  It is injected into the nodule and works to dissolve the fibroma. Members report  it working very fast to  some reporting it did not make much difference.  Very few podiatrist are using Vitrase off label, but we do have a list of 20 or so only in the USA.
  • A foot surgeon may diagnosis the  disease, however, only in extreme cases, surgery has been performed to  remove the fibroma but surgery is generally not recommended for  Ledderhose.  It is known that surgery disturbs the tissue and can cause the disease to become active and produce additional growth. 
  • A plastic surgeon in California  is known to use Xiaflex "off label" to inject into the nodules based on his website.

Who Treats Dupuytren's Disease? (palmar fibromatosis)

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  • Radiation oncologists are specialists who treat  Dupuytren's with low dose radiation therapy to attempt to stop the progression of the disease. Radiation therapy also provides much needed relief from pain from most patients. 
  • Some of the most qualified are Certified Hand Surgeons (CHS). CHS's begin with board certification in their primary medical board (either orthopedic surgery, plastic surgery or general surgery), then complete a one-year Hand Fellowship and pass a board exam to get their Certification in the Subspecialty of Surgery of the Hand (formerly called CAQ Hand). With that certification, they become a CHS.
  • Some orthopedic surgeons, general surgeons or plastic surgeons might also treat your hand but are not CHS. There are also physicians in other fields who occasionally might do NA (needle aponeurotomy) or administer Xiaflex (collagenase).
     
  • The primary treatments offered by these doctors include NA (needle aponeurotomy), Xiaflex (collagenase) and traditional open surgery.  Other treatments include cortisone injections or hand splinting.

 

Testimonials

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Brenda

I had Ledderhose disease appx 3 years prior to having low dose radiation therapy in 2015.  My foot remains in remission, no new growth and to my amazement the nodules are completely flat. I have no pain or tenderness any longer. I reside in the USA


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David

I had low dose radiation therapy appx 8 years ago. I was the first patient of my local oncologist.  My disease has remained stable. I reside in the USA



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Kathleen

I reside in Canada. I have had successful RT on both my hand and foot.



Contact Us

www.dupuytrens.club

Available 24/7

Dupuytren's Types

  • Feet     -      Ledderhose Disease -  Nodule(s) in the arch of the foot.
  • Hand   -  Dupuytren's      Disease  -   Nodule in the palm and then a cord
  • Hand   - Dupuytren's      Contracture  - Bent fingers
  • Penis   - Peyronie's Disease -      Characterized by a curved penis.