Thursday, 29 October 2020

AGM 2020

We had our 2020AGM. We had a good turn out (on Zoom of course), and a lot of good ideas were discussed. Sad news: Birgir Gislason, our Peyronie's patient trustee, is standing down as he is moving abroad soon. We shall miss him, but wish him all the best and are grateful for the support he has given the charity and those struggling with Peyronie's. The Dupuytren Conference will be held as virtual meeting in 2021, sad as there will not be any inpromptu discussions with people in the corridors, but the best decision considering present circumstances. We are still hoping there will be a strong charity representation. Finances: Amazon Smile is a steady source of income for our charity, not a big source at the moment but the more people start using Smile and setting our charity as their preference, the better it will be! Please all do so. (just regsiter at Smile.Amazon.co.uk and shop as normal. Our webinars and videos are a big success, we are thinking about producing some more. They can be found on our YouTube channel: bit.ly/31gieUA We discussed articles the charity can produce to inform people of what Dupuytrens and related conditions are and what we do. We have done a few surveys in the last 6 months, and may well do more. These will help if we do a presentation at the 2021 conference.

Thursday, 10 September 2020

Survey about the feelings Dupuytren's causes

Please take the time to do our survey, let us know how Dupuytren's makes you feel. https://www.surveymonkey.co.uk/r/Y82YWZ6

Sunday, 23 August 2020

August 2020

No new videos, but a great initiative by Dr Eaton's Dupuytren Research Group: Zoom discussion groups, where patients can talk to other patients or specialists, discuss their Dupuytren's and any research or new treatments they may have heard about.. well worth putting your name down for! https://dupuytrens.org/zoom-discussion-group-request/

Wednesday, 17 June 2020

Peyronie's video

Prof David Ralph made a video for our charity to explain the different types of surgery available for Peyronie's Disease, and when each type is warranted. Watch the video here:

Monday, 15 June 2020

our resilience Training videos


We have more to show you!



These are video's to help you cope with a Dupuytren's diagnosis, finding your way through the (mis-)information out there, and moving forward.

Four modules for the Resilience Training:

-Why me https://youtu.be/QRGl0ZtF9J4

-What can I do https://youtu.be/nK5o4Ti6SOI

- How bad will it get https://youtu.be/68bMI1c-_Ks

-Who can I trust https://youtu.be/GQWv1qa0-bY



Special thanks to Eleanor Shakiba who's idea this was, and who spend long ours working on these videos. Thanks to Ian Ireland for editing and re-editing! And thank you to everyone who assisted by being interviewed and giving their time and sharing their experiences.

Radiotherapy Video

We have a present for you! With thanks to Dr Richard Shaffer for the lecture and the interview, and to Mr Ian Ireland for the editing. 
A video on Radiation Therapy for Dupuytrens and Ledderhose. 
 
We attempted a Teams patient meeting last Saturday. It worked, and I am planning to do it again. if you're interested, send me your email address.
 
More news coming soon.
 

Wednesday, 29 April 2020

Help needed for research


Have you used a splint for your Dupuytren's? Did you like it or not?

We need your help for researchers trying to create a comfortable splint glove.

They want to do a telephone or internet interview with patients to find out what we love or hate about our splints and how the designs can be improved.

If you are willing to share your experiences with the Glove Team, check the top two document on link below, sign the consent form (electronic signature or just type your name and date) and email the consent form back to: Patricia Grocott on patricia.grocott@kcl.ac.uk or Tanya Graham on tanya.graham@kcl.ac.uk

 

The files can be downloaded as pdf's from this page:

https://dupuytrens-society.org.uk/charity/pdf-download-page/

 

We will also add them to our Facebook group