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Dupuytren~sq~s in Young Patients
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01/31/01 01:23
Martin Necas

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01/31/01 01:23
Martin Necas

not registered

Dupuytren~sq~s in Young Patients

Dear Forum Members,

I am a 26yo caucasian male, with no family history or DC, no particular history of interest. Drink socially, don't smoke. No traumatic injury, no heavy mechanical work. Yet I've just been dx'd with bilateral minor DC's. Now I'm getting a bit worried, because I've not ever heard of anybody my age getting this problem. My hands are my life. The thought of DC progressing, spreading through my hands, and it's complications given I'm so young, is outright frightening. Is there anybody my age who's ever dealt with this annoying problem?

Martin.

02/04/01 01:49
Ray

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02/04/01 01:49
Ray

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onset of DC

I am not as young as you but am just as worried. I am 47 and otherwise very fit and in great health save for a little osteo arthritis in my knees. Out of nowhere a nodule appeared on my right palm beginning about 6 weeks ago. It is still getting bigger. The doc gave me the speil that I now understand to be the party line. Do nothing until you get significant contracture, then surgery. I have to admit that the surgery looks ugly. recovery looks to be drawn out and difficult and trying to function with one hand (I assume they only do one at a time) has got to be troublesome. I have had major knee surgery and I think I would rather have that again before Dupuytren's surgery. Hope that experimental Cordase treatment pans out before my condition worsens.

Like you, I thought that no one in my family had it but when I explained it to my dad, he said that he had the same thing. He didn't know the name of the condition but said he went to the doc 15 years ago for the problem. He is lucky since it seems not to have gotten too bad. Many nodules but no serious finger contracture. I can only hope that my disease takes a similar course.

I wonder if progression is generally similar in relatives or if it can vary a lot. Anyone?

02/05/01 01:59
jim h

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02/05/01 01:59
jim h

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onset of DC

I'm 49 now. DC first became noticeable in my right palm at around age 40 - it probably began sooner and I didn't notice it. At 47 I had surgery on the right palm. While the surgery is a tedious business, the result can be satisfactory if the surgeon is good AND you do all the excercises they prescribe as part of the recovery. I have the beginnings of DC in a few other places on my hands, and on one foot, but the progression is glacial and it's not causing me any real problem right now.

From what I've read about Collagenase, it looks very promising.

Although DC is pretty alarming when you first learn about it, the progression is often extremely slow - meanwhile, Collagenase injections should be generally available within 2 years, maybe less...

02/05/01 01:40
Ted

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02/05/01 01:40
Ted

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how often do children get this

Is 33 too old be young? I've had an agressive dose of DC(surgery 4 times to remove 5 lumps) since 1993. Yup, it's scary, but the surgery really wasn't a big deal. Next day I was right back on my keyboard at work, 2 weeks later started stretching out the scar tissue, 3 weeks I was working on my car and in my woodshop. It sure beat having my hooked fingers and tender palms. My Doc gave me back 90-100% of my finger movement, and things are ok. Keep your chin up. Anguish over it accomplishes nothing. Don't allow it to take your peace of spirit too! There's more to life than hands(ask someone who hasn't got two hands!). Ted

02/06/01 01:56
Ray

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02/06/01 01:56
Ray

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how often do children get this

From my limited research, 33 seems really young to need surgery. You said you had surgery to remove lumps. I assume that since you said finger motion was restricted that you had also the cords infiltrating the finger joints? Glad it worked out well so far. How long before you noticed the first lump and significant impairment? Both hands or just one?

Ray (one lump on one hand and wondering what's next)

02/16/01 01:17
sharon

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02/16/01 01:17
sharon

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how often do children get this

My fiancee is 35 yrs old. At age 18 he was diagnosed w/ DC. Now we have a 9 month old daughter and I'm scared to death. I was told by the hand doctor that a daughter would have extremely small change of getting this, today I read that she has a 50% chance, just as a boy would.
Her father has had so many surgeries on his hands and 2 on his feet. He now is on disablity because of severe crippling in his hands, and his pain is constant. His doctor keeps talking about amputations. I keep praying he will try to hold out until we get the results of the NY study.
Does anyone have any real information on the study? What can I expect for him...What can I expect for our daughter?
Please help!
Sharon



02/16/01 01:20
jimh 
02/16/01 01:20
jimh 
32 year old woman with DC

I've seen information on the results of the Phase II SUNY study on several web sites, and it appears to have been very successful. My understanding is that the Phase III trial will begin soon - I think Phase III is about determining optimum dosage, etc. I have DC too, have had one hand surgery, and I'm holding out against additional surgeries while I wait for the Collagenase injections to become available - which may be another year or two. I'm not a doctor or any sort of medical professional but everything I've read and heard indicates that if development of this drug stays on track it's going to be the answer for a lot of people.

06/06/01 02:56
L.

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06/06/01 02:56
L.

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32 year old woman with DC

I am a (nearly) 32 year old woman diagnosed with DC earlier this week. So far, I have two nodules in my left palm with a slight decrease in flexibility. I haven't heard of DC in my family, but my father and I were comparing hands a few weeks ago, and I think he might be showing symptoms. (As a male who is nearly 60 years old, he more closely fits the usual profile.) It has been an emotional few days contemplating possible outcomes for my future, but I am trying to stay positive.

L.

06/08/01 02:18
Chris Pollard

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06/08/01 02:18
Chris Pollard

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Yup...know what you mean.

I began to develop "knuckle-pads" around the age of 17. I'm told that knuckle-pads are a VERY rare secondary complication of DC, which occurs in less than 2% of DC patients. So, I'm the luckiest of the lucky I guess. Anyway, at age 26, I began the more classic signs of DC in my right palm. I can also feel a sore spot in my left palm below my index finger--likely a band is beginning there. I am now 31. I can emphathise with your situation. While I'm trying to avoid adopting a disability mindset, it's been really tough. I hope you're doing better at that than me. Regards.

06/10/01 02:08
jim h

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06/10/01 02:08
jim h

not registered

Thanks, Chris

From what I've read I don't think knuckle pads are that rare. I have them as part of my DC, and the therapist and surgeron recognized them immediately and did not seem at all surprised.

I had one of the pads removed when I had palm surgery.

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complications   debilitation   surgery   hypocondreact   development   significant   Dupuytren~sq~s   Collagenase   contracture   finger--likely   progression   understanding   infiltrating   unpredictable   contemplating   professional   affectionately   accomplishes   knuckle-pads   information