Friday, 30 March 2018

Trials happening

Exciting times!

The new bank account has been approved, so that is a step forward. Now We just have to get it up and running, and change bank details with all the giving sites and donors. I feel a coffee-binge coming on!

 The Dutch radiotherapy trial for Ledderhose is well under way, there are plans for a Dupuytren's radiotherapy trial in Australia, in Finland is a trial comparing PNF, Xiapex and LF surgery, and the two trials running in our country, RIDD and DISC are recruiting patients all the time. So doctors out there are trying to get more understanding of what treatment to recommend at what stage!

 The official announcement for the Dupuytren Award is expected soon, this year funded by patients and doctors!

Meanwhile if you are going to try any Over The Counter products for you health problems, think of this picture before you spend your money!
 
Have a good Easter or Passover this weekend, or just have a good weekend!
 


Monday, 5 February 2018

Fundraiser for the Dupuytren Award

We have started a fundraiser!
We decided in co-operation with an American Facebook group to do a fundraiser, hoping to finance the International Dupuytren Award. This is a reward given to (or split over) the most promising Dupuytren research yearly, basic scientific or clinical (or both).

Sponsoring this award will show researchers and surgeons that patient groups are interested in new treatments, and want to be involved. After a few months of discussions and trying to organise it, here we go!

If you can and want to contribute, however little you can give, go to the International Dupuytren Society page and use the first donate button. Thank you for your contribution!
https://www.dupuytren-online.info/donations.html

Let's show the scientists what we are made off.

Thursday, 18 January 2018

Research and support

We have a new piece on the research page, about research being done in King's College London on fibrotic conditions. Check it out! http://dupuytrens-society.org.uk/information/ongoing-research/ 
 
A second bit of news: the South East England support group is starting to take shape, they had a meeting yesterday. If you are interested please let us know.

Tuesday, 19 December 2017

Registered charity number



We have an official charity number at last!! A good Christmas present for the charity.

Wednesday, 8 November 2017

Peyronie's news and DISC trial

A recent study has shown that men with Peyronie's Disease may be at higher risk of developing certain cancers. This is not good of course, but at least if we know about it, those men can be monitored for early signs and treated as soon as necessary.
Our trustee Birgir Gislason has done a post about it on his website. https://www.mypeyronies.com/peyronies-cancer.html
It is not really surprising, seeing having Dupuytren's Contracture has also been linked to an increased risk, in a study by Zyluk (2015) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3973858/pdf/1897-4287-12-6.pdf
So make sure you talk to your GP if you notice anything that might be suspicious in your body!

On a more positive note the DISC trial is starting, where the longterm results of surgery and collagenase injections for Dupuytren's will be compared. https://www.york.ac.uk/healthsciences/research/trials/research/trials/disc/
Anyone interested in participating please discuss this with your doctor.

Monday, 23 October 2017

surgery app testers needed


We need your help! We hope to assist in the production of an app to help patients prepare for Dupuytren's surgery and the recovery afterwards. This prototype needs to be tested by as many patients as possible, preferably those who have had surgery (fasciectomy), are waiting for surgery or are considering it.
If you think you can help, please reply to the email address on the text below.

Introducing the British Dupuytren’s Society surgery app
The British Dupuytren’s Society is working with the team at myrecovery.ai on a smartphone and tablet app to help people get ready for and recover from Dupuytren’s contracture surgery.
The app is a digital companion for anyone having Dupuytren's surgery and includes videos that highlight the main points for each stage, alongside interactive exercises and useful information for every step of the treatment journey.
The app is in constant development and we are currently recruiting patients for our "Expert Patient Tester Group," to gather feedback, suggestions and ideas for how the app can help people in the best possible way. 
If you are interested in testing the app, let us know or contact the myrecovery app team directly (bds@myrecovery.ai) and they will help you get started. 
Many thanks – we look forward to hearing your thoughts and suggestions!