Hi! I am a nineteen year old, and was just diagnosed with Dupuytren (confirmed by a hand surgeon, MRI and ultrasound). If anyone else is a young female (or male) it would be great to hear your experience with Dupuytren. Thanks!

Edited 12/25/18 10:43

Thank you for the response! :)

Hi Rebecca; Like Jason people no longer see me as young but I was young once.

My first surgery on my right foot was in my early teens. The lumps returned in no time. By the time I was twenty I hand dupuytrens in both hands and ledderhose in both feet.

I now believe young means aggressive but back then I didn't even know what it was.I hadn't connected the issues with my feet with the problems with my hands. I finally got a diagnosis in my early 30s.

The good news is that I am now 64 and the DD and LD does not get in my way. I play tennis 3 times a week, i go to the gym nearly every day, I do bicycle trips etc etc. Most recently cycling on mountain bikes with one of my daughters in Ubud, Bali.

My case is aggressive. I get treatment it comes back fast and hard. I have had surgery on one foot in my early teens resulting in a return of the lumps twice the size. Also had surgery on left hand in my early 30s. I have had NA 10-12 times and going back Paris in a couple of months to get both hands done again.

My advice is take it slow. Think long act slow. Surgery should be a last course of action not your first choice despite what the medical world my tell you.

Hi Rebecca
I was diagnosed at 16, I'm now 37. I don't know if this helps you, but here's my experience living with dups. Both my parents has it, but they both just started developing chords, I was diagnosed way earlier than them. My right pinky was the first finger to be affected at about 14. It started in the first joint, not in the palm. Just a sligt contracture of a few angles which did not progress for about 12 years. At about 19 my right thumb developed a cord in the palm too. Neither of them gave me any trouble even though I'm a part time professional musician. (Guitar and piano) At about 26 or 27 the pinky started to curl in. I guess it took about two years before it was totally bent towards the palm. I had to give up guitar for a peiod due to the pinky hitting strings over the bridge, but i was able to keep playing keys albeit with one less finger and a much narrower span.. Had Xiapex done 2 weeks after my 30th birthday. Luckily it is still straight and shows no signs of recurring even after seven years. I had started developing a nodule on the cords to my ring finger some time before the Xiapex treatment. My thumb has not gotten any worse since the day it was diagnosed and is still functioning just fine, but the nodule on my ring finger is now a cord running my entire palm. Last year nodules started developing on the cords to my middle finger too. I can still lay my hand flat on a table, and it does not affect my playing yet. However the ring finger is a bit painful at times. I will get NA as soon as it gets too bad. Four fingers on my right hand is affected, but my left hand is still perfectly fine.

The way this disease work has made me feel sort of depressed at times. I have no way of knowing how long I will be able to keep doing the thing I love to do the most. It might be the rest of my life or maybe just another five years. Who knows if the next surgery will affect the nerves somehow making it impossible to keep playing? But I try to remind my self that I have no way of controlling this, just like so many other aspects of life. I might get hit by a car or I might get cancer before dupuytrens becomes a real problem. If it ever does.. The prospect of maybe one day not being able to do what you love today should not stop you from doing it. I admit it has been mentally rough at times, but there's a million worse things to be diagnosed with.