Dupuytren's Disease, Dupuytren's Contracture and Ledderhose Disease, A RARE DISEASE recognized by NORD

NORD, National Organization for Rare Disease recognizes Dupuytren's and it's affiliated disease as a rare disease. http://rarediseases.org/rare-diseases/dupuytrens-contracture/ While Dupuyren's disease or Ledderhose disease does not always cause contracture, Dupuytren's Contracture is a term used for the hands when they do contract.  NORD has chosen February 28, 2017 as Rare Disease Day( http://rarediseases.org/for-patients-and-families/connect-others/rare-disease-day/ )and on this day we can each share our story on their website and on our personal sites to make others aware of this disease.  Please share your story, our disease is not as rare as you think!  We have millions of people in the USA with this disease and we still do not have anyone in an active stage of testing for a cure.  The Dupuytren Foundation is trying to find 10,000 people to sign up for the Dups Study, but in 6 months they have only found 700.  So, sharing your story will help us get to those millions.  If you have not registered, please do: The Dup's Study link is:  http://dupuytrens.org/enroll-in-the-iddb/

Follow me:  

Email:          DupuytrensDisease@mail.com 

Facebook:    Click here to join DART Facebook forum 

Website:      www.DupuytrensDiseaseSupport.com 

My Blog:     http://dupuytrensdiseasesupport.blogspot.com/ 

Twitter:       https://twitter.com/DupuytrensForum 

Twitter:       https://twitter.com/isellure

Dupuytren's Disease In The News

RUSSIA CONFERENCE May 2016
First international conference in Russia, dedicated to the problems of Dupuytren's contracture treatment and treatment of other diseases of the hand, such as stenosing ligamentitis (Trigger finger, De Quervain tendinitis), tunnel syndromes etc.

It is a shame these Surgeons do not even mention Radiation Therapy as a treatment option.  With no cure, it would be BEST to have non-invasive treatment if possible before any surgery since trauma tends to put Dupuytren's or Ledderhose into an active state.  ARGGGGG!
#dupuytrens #ledderhose #radiationtherapy #nosurgeryfordupuytrens #DARTonfacebook

Follow our website at:  www.dupuytrensdiseaseforum.com
Join DART on Facebook to learn more about treatment options  https://www.facebook.com/groups/1622748151282109/
Sign up for the Dupuytren's Study:   http://dupuytrens.org/enroll-in-the-iddb/
Follow us on Twitter:   https://twitter.com/DupuytrensForum
Follow me on Twitter:  https://twitter.com/isellure

Dupuytren's Disease in the NEWS, Do you ever see it?

I am attaching a link to the Dupuytren's Symposium that was last year. http://www.dupuytrensymposium.com/ 

Many people do not know there is work going on but there is just not one place to find it all.

FACEBOOK:   I hope you also join us at DART on Facebook.  Our link is:  https://www.facebook.com/groups/1622748151282109/

WEBSITE:  To find out more about Dupuytren's Disease or Ledderhose Disease follow my website at www.dupuytrensdiseasesupport.com 

ON TWITTER:  #dupuytrens #ledderhose  @isellure and @DupuytrensForum

DUPUYTREN'S FOUNDATION SEEKING GRANT WRITER

March 31, 2016 
The Dupuytren's Foundation is seeking a qualified Grant Writer.  This person will need to submit a full resume and references. 

Please contact
Dr. Charles Eaton 
EMAIL:  info@dupuytrens.org
PHONE:  949-287-3387

#dupuytrens #ledderhose  
http://www.dupuytrensdiseasesupport.com/
https://www.facebook.com/groups/1622748151282109/

12 weeks after my 1st Radiation Therapy Treatment for my Ledderhose Disease (Dupuytren's Disease)

On the Monday starting the 12th week after my 1st radiation therapy, I am back in Tampa for my second session of RT with Lawrence Hochman, RO. http://floridacancer.com/physicians/lawrence-hochman-do-facro/   I am feeling none of the anxiousness I felt prior.  I know what to expect.  OR, I should say, I know to expect nothing.  That's a good thing!

I returned with some reservations about getting this second round of RT.  I felt I had enough pain relief that I really considered not having this second session.  It was explained to me that I needed it.  It was explained that round 1 was like taking 1/2 your dose of antibiotics and round 2 was finishing up the antibiotics.  The only reason I had such reservations is because I only get these two sessions of RT for life.  I was wondering if I should "save" this second session for the future if I needed it. Needless to say, I returned and I am so thankful months later that I did!http://www.dupuytrensdiseasesupport.com/


I completed my week of radiation therapy with nothing to report.  It takes appx 45 seconds per foot to administer the RT.  Dr. Hochman's team is an "on-time" group.  My appointment was at 9:30 am and at that time I was already in the room having my treatment and by 9:40 I am out the door.

The team took a look at my fibromas and felt them.  The large one is still there and can be seen and felt with a little less of a pointed stone on the top. The smaller ones are so small they are well under the skin.

I continue my RT-vacation with my water sock, keeping my foot out of the chlorine and sun.  We did take a kayak trip this time and did quiet a bit of vacation looking in Tarpon Springs, Weeki Watchi, Clearwater Beach and any other spot that looked interesting.  Who would want to miss this?
The water is crystal clear!  

I cannot stress enough to you how I connected to the Facebook forum DART - Dupuytren's Advocates for Radiation Therapy.  It was this group that got me to where I am and I want to continue to be part of the Dupuytren's and Ledderhose Community and give back.  I wouldn't want anyone to suffer as I did with this disease.  If you do not belong to a Support Group, I strongly suggest you join us at: https://www.facebook.com/groups/1622748151282109/

Below is the DART logo you are looking for:

What I did after RT for my Ledderhose Disease (and it's connection to Dupuytren's Disease)

From the first day of RT, I was asked to keep a cover on my foot for the week or so.  That could have been a sock, a shoe or in my case because I traveled to Florida I wore a water sock so I could go into the pool everyday.  I was asked to keep my foot out of the water (due to the chlorine) as much as I could.  I also wanted to keep the sun away from the treated skin.  When out of the pool, I wore my trusty Crocs and tennis shoes.  I went about my normal day, grocery shopping, walking my laps and swimming.  I tried to stay off any gravel or grassy areas since I didn't want to step on any unwanted rocks or stones.

I used these in the water and they worked perfectly.  I could walk to the pool with the hard sole and left them on while in the pool.  They worked out great.  While not so stylish, I had to gather my pride and realize more than likely I would never see these people again.  http://www.fila.com/womens-skele-toes-ez-slide-drainage/5PK14074.html?dwvar_5PK14074_color=033#q=skeletoes&start=1

 

8 weeks Post RT for my Ledderhose Disease and it's connection to Dupuytren's Disease

I've charted my weeks and months after Radiation Therapy, but I will recap some of those dates in the weeks to come.

First RT Session June 2015. It took appx 8 weeks before I really "saw" any change in my fibromas.  It was a mild change at 8 weeks.

At 8 weeks, my foot looked a little swollen in photos.  While I did not feel any of this, it looked as if the arch area was almost flat to the remainder of my foot.  I have a normal arch so it was noticeable.  The skin also looked "thin".  I can't find another word for describing it.  It was never a red spot, and never an irritation at any of the fibroma locations.

At 8 weeks I was definitely on my way to being pain free.  The big toe pain I was experiencing was very mild and the fibroma pain was mild also.  I would say a 3/4 out of 10 on most days.

When I walk a lot the fibroma will have a tender feeling when I take my shoes off and that feeling continues until the following day.  I have resorted to wearing Crocs as much as I can at home.  That firm cushion they have seem to sooth the tenderness.  I definitely cannot go barefoot. 

My plantar fasciitis(PF) prevents me from every walking barefoot, even at home. If you have PF the fibroma pain is right up there on the same pain level.  My PF will not be the throbbing pain it looks like.

I have tried to stay in either Nike tennis shoes or Crocs from the minute I wake up until I go to bed.  I find with this I get the most relief.

I have a pair of Teva sandals that I can wear, but I cannot wear them more than about 2 hours and really don't want to be on my feet all that time because my fibromas will be very tender.  But, I do see the possibility of other shoes in my future.