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Young people with Dupuytren
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12/25/18 10:43
Rebecca 
12/25/18 10:43
Rebecca 

Young people with Dupuytren

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

12/26/18 09:35
spanishbuddha 

Administrator

12/26/18 09:35
spanishbuddha 

Administrator

Re: Young people with Dupuytren

Rebecca:
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!
Hi Rebecca, I’m not sure how much of a response you will get, but we have a couple of past threads that might help, starting https://www.dupuytren-online.info/Forum_...1536686734.html. Best wishes SB

Edited 12/26/18 09:36

12/26/18 09:46
Rebecca 
12/26/18 09:46
Rebecca 

Re: Young people with Dupuytren

Thank you for the response! :)

01/24/19 09:17
Jason 
01/24/19 09:17
Jason 
Re: Young people with Dupuytren

Hi Rebecca, though I’m not “young” anymore I used to be. I’m now 43 years old. I have both DC and plantar fibromatosis. I had my first foot surgery at age 12. I had another at 13 and a third at 14. I didn’t have another foot surgery until I was 36 or 37. I have more fibromas growing in the same foot. My left foot has never been affected.

I didn’t notice any DC until late 20s or early 30s. I have had 3 surgeries on my left hand and 1 on my right hand before my 40th birthday. I also had a Xiaflex injection on my left hand prior to my last surgery. I have several bands in both hands and will most likely have my second surgery on my right hand this fall.

My experience is I have an extremely aggressive case. I assume other people who get it young have agrressive strains as well.

01/24/19 12:03
Seph 
01/24/19 12:03
Seph 

Re: Young people with Dupuytren

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.

08/19/20 06:21
Cait 
08/19/20 06:21
Cait 
Re: Young people with Dupuytren

Hello Rebecca!

I’m 25. About six months ago I developed a nodule in the third webbed space of my left palm. I experienced itching, burning and dull pain near the nodule. I have no known family history, but I honestly don’t know much about my extended family.

A couple months ago I finally met with a hand surgeon. He said it looked like dupuytren’s, but since DD is so rare in my age group he recommended I get it removed just in case it was cancerous. I ended up having the surgery and the pathology report came back last week confirming the initial diagnosis of dupuytren’s.

Now I’m just nervously waiting for it to return with a vengeance since the general consensus on the internet is that it tends to be aggressive in younger individuals. For the past two years I’ve been working a job that puts a fair amount of stress on my hands, so I’m currently considering quitting so that I don’t do any unnecessary harm to encourage further progression.

08/24/20 14:32
eirikpetters 
08/24/20 14:32
eirikpetters 
Re: Young people with Dupuytren

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.

05/17/21 07:24
wheels 
05/17/21 07:24
wheels 
Re: Young people with Dups - No Beer!

Do Not Drink Beer! And if you should find your palms itching, try to correlate it with something you have eaten - and then share with this group!
Wheels.

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