Hello all.

I’m a 48 yo male and I have just been diagnosed with Dupruytrens disease, I have a nodule on my left palm below the ring finger and I think (not sure) I have one forming on my right palm in the same place (right now the one on my right palm feels more like a small dent?).

I have been reading this forum for the last week or so and I have to say there are some amazing people on here. You are all very helpful and supportive and I thought I should at least introduce myself and maybe try to get some answers at the same time.

I know that nobody can give me a definite answer but, how long does this disease usually take to before contracture starts?

Does, everyone get contracture?

Is there more mild cases then severe cases? (If there are mild cases I don’t think I’ve read a post from anyone in this forum)

I have read a lot of your stories on this forum and I hope I’m as brave as you all are but right now I’m feeling pretty scared and isolated.

I wish my GP was more helpful but all he really told me was “If it doesn’t change in six months you probably will not have to worry about it for 10 years.” What does that mean??

I have an appointment with a plastic surgeon (hand specialist) in four to six weeks.

Signed
Gmacd (worried)

Hi gmacd, welcome to our forum! I'm trying a few answers below:

I know that nobody can give me a definite answer but, how long does this disease usually take to before contracture starts?
A: no definite period. May take a yer, or 10 years, or forever.

Does, everyone get contracture?
A: No.

Is there more mild cases then severe cases? (If there are mild cases I don’t think I’ve read a post from anyone in this forum)
A: yes. Some people get just a nodule and no contraction at all but typically the nodules convert into cords and eventually create an extension deficit.
BTW, comments in this forum are somewhat untypical because people with no problems typically don't visit forums. It#s the people with problems who post. The disease might sound a little worse than it is on an average.

I wish my GP was more helpful but all he really told me was “If it doesn’t change in six months you probably will not have to worry about it for 10 years.” What does that mean??
A: you might be one of thos epeople where the disease progresses very slowly and you it then might take 10 years before you develop strong contracture. You may not want to wait that lang and have the samll nodule treated earlier e.g. by radiotherapy.

Thanks alot folks for your answers it all helps.

I guess what really worries me is I envision myself with crippled hands and not being able to live a normal life. I've always been a bit of a nervous person so I immediately jump to the worst conclusion. Does this happen to alot of folks who have our luck in inheriting this disease or is there always hope and surgery to correct the contracture and get our hands working again?

Also is it ok to have a few beers still as i have read that alcohol is not good for DC?

Sorry for being a pain in the ass , with all my questions but it seems the best answers come from you guys and gals.

Thanks again

gmacd.

"I wish my GP was more helpful but all he really told me was “If it doesn’t change in six months you probably will not have to worry about it for 10 years.” What does that mean??" It means you need another doctor. Considering how debilitating the disease can be it is irresponsible for a GP to take a wait and see attitude. My GP recommended acupuncture (at her off-site clinic of course).

X-ray treatment is the only treatment that may be able to arrest or slow the progression of the disease and it is most effective in the early stages. Waiting until you have nodules and contractures is unwise for this reason. I wish I had my XRT when I first starting having problems with one of my hands. Instead I listened to the advice of my GP and then a certified hand surgeon and my XRT was delayed by a year. The hand with the least progression evident at the time of the XRT has remained stable after 2 years but not the other hand that already had a severed contracture.

My husband developed nodes in December and I developed them in January. (Weird, huh?) Neither one of us has developed contracture yet. We had an excellent consultation yesterday with Dr. David Fleiss in NYC. He was extremely thorough and reassuring. His contact info is on this site. Right now, we are in the wait and see period. There is a chance that we may never develop contractures. He has our baseline measurements. We're seeing him again in 6 months.
Good Luck.
judyj122