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Dupuytren's Contracture in 6 year old female
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31.03.22 04:29
alwilson 
31.03.22 04:29
alwilson 
Dupuytren's Contracture in 6 year old female

Hi, I live in Qld, Australia. I'm looking for information/advice for Dupuytren's Contracture in children. My daughter is 6 years old and had surgery 2 weeks ago to remove what was originally thought to be a tumour. Her surgeon was floored when it turned out to be Dupuytren's Contracture. He said the fact that she was a female child so young was unbelievable and the youngest person he'd ever seen it in.
I understand there is a 100% regrowth rate.
I have a lot of questions that I haven't been able to find answers for, around expected timeframe for regrowth and preventative measures and less invasive treatment options that we can look at in future.
It would be fantastic if anyone could please point me in the direction of any information that might exist around treatment options for children.
Thank you, Alison

31.03.22 05:48
Seph 
31.03.22 05:48
Seph 

Re: Dupuytren's Contracture in 6 year old female

Hi Alison; I am stunned to hear that your daughter at only 6 has Dupytren's and to some extent even more surprised that they operated, in this era, without knowing what it was. I think it was understandable in a small country town in NZ back in the 1960's when they operated on me thinking that I had a tumour but in Qld today? I am a male and was 13/14 at the time.

The bad news is that it does seem come back but the good news is that it is relatively easy to manage. My condition progressed to be in both hands and both feet by my early 20's but I turn 68 in a few weeks and I still go to the gym for an hour or so every day and play tennis 4-5 hours every week (Except at the moment as it is raining all the time - we live in Sydney).

My first operation was actually on my foot and the growth returned twice the size within 18 months. 2nd operation was on one of my hands and it was close to ten years before I felt the need for further intervention and that was in a new location. I was getting ready for a second hand operation when I heard about needle aponeurotomy and, for me, that has been very effective.

The disease seems to return relatively quickly after needle aponeurotomy but it is a quick and simple process and there is no limit to the number of times it can be done (Unlike surgery). I now view it as the equivalent of a bi-annual trip to the dentist.

Others swear by radiation therapy and I wouldn't try to turn you away from this its just that I haven't been there.

I am happy to talk to you privately about my experience if you wish. Just send me an email or a private message and I will send you my contact details.

Good luck.

Seph

31.03.22 06:59
Stefan_K. 
31.03.22 06:59
Stefan_K. 

Re: Dupuytren's Contracture in 6 year old female

Hi Alison, welcome to the forum.
Sorry and surprised also someone this young has to deal with Dupuytren's Disease and to undergo surgery.
Radiotherapy has stopped mine, but even as a believer in that treatment option I would understand if doctors were hesitant with a six year old.
Can you tell us more about what your daughter had and was removed (size of the nodule, where, how long you believe it had been there), assuming she didn't have a contracture yet, but is in an early stage of the disease?

Stef

[59, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

31.03.22 08:49
spanishbuddha 

Administrator

31.03.22 08:49
spanishbuddha 

Administrator

Re: Dupuytren's Contracture in 6 year old female

We have a couple of older threads where DD was diagnosed in younger people, although there's not much information on the outcomes, see
https://www.dupuytren-online.info/Forum_...36686734.html#2 and https://www.dupuytren-online.info/Forum_...1516291138.html You could try DM to the posters to see of they respond.

The FB group run by the BDS is often frequented by experienced Drs treating DD and if I recall there was a similar case there too, so you could try posting on there. https://www.facebook.com/groups/BritishDupuytrensSociety Best wishes SB

19.07.22 12:54
Rebecca 
19.07.22 12:54
Rebecca 

Re: Dupuytren's Contracture in 6 year old female

Rebecca :)
Diagnosed at 19/Female/Family History of Dupuytren

Hi! I was diagnosed a few years ago in my late teens, however, I had fibromas in other parts of my body (neck and chest) from childhood (which could be connected to DD). I am also from Australia! Feel free to ask me any questions if it could help your daughter!

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