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Male, 26, and just diagnosed.
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05/04/2017 23:41
BlazerFS23 
05/04/2017 23:41
BlazerFS23 
Male, 26, and just diagnosed.

Hello all!

I was diagnosed with Dupuytren's today.
This was the second orthopedic surgeon to give me this diagnosis. Both doctors said I am the youngest person they'd ever seen with this disease and they're not entirely sure why it developed so early.

Is anyone else on this site obscenely young to be suffering from Dupuytren's? How did you deal with it? How are you approaching the idea of multiple surgeries? How does it affect your day to day life?

05/05/2017 01:41
Seph 
05/05/2017 01:41
Seph 

Re: Male, 26, and just diagnosed.

Hi BlazerFS23; Welcome to the club. If you trawl through this site you will find you are young but there are many who were younger than you when they first showed signes of the disease.

I first developed the disease in my early teens and by the time I was your age I had it well developed in both hand and both feet. I am now 63 and have just returned home from a 1.5hr gym session. I play tennis 3 times a week, I use the gym 5-6 times per week for cardio and weight work, my wife and go on a cycling tour for 4-5 days every year and we walk a lot. All that simply to tell you that dupuytrens does need to restrict what you do. I treat it as an inconvenience and friends joke about my weird handshake.

You haven't said much about you symptoms but am assuming that they are not significant at this stage so a word of caution. Surgery should be treated as a last resort not you first port of call. You say you have seen two Orthopedic surgeons. Remember that they are surgeons and they do surgery. There are other treatments that are effective.

For my part I have had surgery on one foot before I knew any better and the result was that the LD came back almost immediately, twice the size, in the same place. I have also had surgery on one hand 35 years ago before other options came available. Since then I have had NA 8-10 times. I am having NA done again next month while on a trip to Paris.

Surgeons will tell you that with NA the disease comes back quicker than it does after surgery. That is true but surgery is a big deal while NA is like going to the dentist. I am booked in for NA at 1pm and by 2pm I expect to be siting on a Paris sidewalk with a glass of wine.

Good luck but go slow with treatment. This can be a slow progressing disease and you might not need any treatment for years.

05/05/2017 06:58
spanishbuddha 

Administrator

05/05/2017 06:58
spanishbuddha 

Administrator

Re: Male, 26, and just diagnosed.

There are a few threads from people diagnosed at a younger age. Instead of thinking surgery think maintenance. You might never get a contracture, or it will develop only slowly over many years. With judicious use of RT, NA or Xiaflex or open fasciotomy you might be able to manage without the normal understanding of surgery. Find a doctor who knows about all these treatments and does not follow a dogmatic path of wait till contracture and surgery.

Here's some of the threads:
http://www.dupuytren-online.info/Forum_E...-dd-0_1956.html
http://www.dupuytren-online.info/Forum_E...-do-0_2262.html
http://www.dupuytren-online.info/Forum_E...ask-0_1570.html
http://www.dupuytren-online.info/Forum_E...ted-0_2151.html
http://www.dupuytren-online.info/Forum_E...eps-0_1950.html
http://www.dupuytren-online.info/Forum_E...-rt-0_1993.html
[url]http://www.dupuytren-online.info/Forum_English/board/dupuytren/28-years-old-post-diagnosis-checkups/monitoring-for-symptoms-of-recurrence-0_1973.html[url]

05/14/2017 11:45
BlazerFS23 
05/14/2017 11:45
BlazerFS23 
Re: Male, 26, and just diagnosed.

Thanks for the info, all! My main symptoms are some pain when I put pressure on the nodule and a severe decrease in grip strength in my affected hand. The grip has already had a pretty serious impact on my job, which is why I'm so concerned about how this will progress.

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Surgery   contracture   disease   Dupuytren   dupuytren-online   treatments   diagnosed   understanding   inconvenience   progressing   dupuytrens   28-years-old-post-diagnosis-checkups   significant   monitoring-for-symptoms-of-recurrence-0   immediately   approaching   maintenance   developed   orthopedic   surgeons