Hi,

I'm a 30 year old student and musician from the South of England and was diagnosed with Dupuytren's by my doctor just a couple of hours ago. Over the last couple of years my hands have become achey and get sore quickly when I've been typing essays and playing my flute. I noticed bumps in the palms a couple of months ago, and didn't think much of it until last week, when my mum told me she had been diagnosed. She has nodules measuring around 1cm on both palms beneath the ring finger, and I've noticed that I also have them in the same place, around 2-3mm at the moment. I can also see other small nodules in quite a few areas on both hands. My mum's hands have got a lot worse in the last 6 months (she first noticed the nodules 1 year ago) and are very painful. I've read that in younger people, the condition progresses a lot quicker - I'm really worried about this. It's also disheartening that radiation therapy is so hard to come by for this in the UK -my doctor refused to refer me until I could give her definite names of Dr.s likely to do it. I can't afford to pay for it in another country. Getting scared now because I write (heading towards academic career), compose music and play the flute, so mobility in my hands is essential if i want to continue with those things.

Is there anyone on the UK who has made any headway finding doctors who will try RT for this? Know of any clinical trials for the treatment that it might be possible to get in on?

Any help/advice/support much appreciated.

Gem

Hey Purplegem... I have contracture in both hands and can still play the sax..in fact have been teaching myself the bass guitar recently.. Your condition is simply a challenge .. Your dreams can still be realised and be rewarding with or without DC if you want them to happen badly enough.. Just like before but a little different.

I do hope you all the best.. You have started on a path that many walk..You however are not alone. Best wishes..Macman

I have no family history of Dupuytren's Disease, but I have it. There were nodules in every quadrant of my right hand. I had itchiness, weakened grip and tightness across my palm and mild aching, but no real pain. Cords causing Stage I contracture developed, so I had NA to release the cords. About 3 months later, I had RT that reduced the nodules, stopped the itchiness, strengthened my grip and reduced the tightness. So far, it has stopped the progression.

I don't know anything about Ledderhose but what I have read on this website and hope never to experience it.

I have had Dupuytrens since my earlr 30's and had six ops (all fasciectomoies) three on each hand.

However it has never really affected my ability to play the drums! (at least not for long)

Paula

Every case is different. With regards to RT the changes are gradual, but in my case they continued for about three months. I had multiple nodules on my left hand, a very small cord running along the index finger and my hand was tight, couldn't open it all the way, and I had constant burning and itching... the itching and burning stopped almost immediately after RT. Three months later, the nodules are smaller and not so hard, the small cord is gone, and I definitely have a wider span from thumb to pinkie, the hand doesn't feel tight.

Hope your hand continues to improve over the next few months.

Edited 05/07/10 18:12