Wednesday, 3 August 2022
Dr Ed Davis has been pro-active for Ledderhose sufferers in the UK, and found a compounding pharmacy in London willing and able to make verapamil gel. Patients would need a doctors prescription that is private and states it is for a treatment that needs to be compounded. More on this development on our webpage https://dupuytrens-society.org.uk/verapamil-gel-for-ledderhose-disease/ The pharmacy in question is Specialist Pharmacy in Dagenham, London. The person who agreed to this is called 'Victor'.
Sunday, 24 July 2022
We have set up a webshop! It has taken quite a while to get to this stage, but it is finally up and running. The address is: https://dupuytren-shop.teemill.com/ You can read what we offer here: https://dupuytrens-society.org.uk/webshop/ Any profits will go to Dr Eaton's Dupuytren Research Group, to help in the search for a biomarker. Delivery is to most countires worldwide, and more products or logos can be added anytime. I hope you like it!
Saturday, 30 April 2022
We have major news! The results of the RIDD trial have been published, and the trial was succesful. The nodules that were injected got softer, and progression stopped. This is major, it means a better understanding of the disease and maybe this injection (adalimumab) can become a treatment for early Dupuytren's in the (near?) future. To see the results: A short video to explain the trial: https://youtu.be/jyoUkLiUg4Q The press release is here: https://www.ndorms.ox.ac.uk/news/breakthrough-in-treatment-for-dupuytren2019s-disease The RIDD page with updated links and information: https://www.ndorms.ox.ac.uk/research/clinical-trials/completed-trials/ridd And the complete article (open access) can be found here: https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00093-5/fulltext Read, enjoy, and the community of worldwide researchers and hand surgeons are already starting to comment and discuss this.
Monday, 28 March 2022
We are considering a new set of videos, where patients discuss the treatment they had for their condition. Ideally some good results and one or two bad, so people who watch them can get a realistic idea of what they can expect. Dupuytren and Leddrhose, maybe also peyronie's depending on the volunteers we get. The videos would be recorded as group chat via Zoom or Teams, and edited afterwards. If anyone is interested in participating please let me know. In other news the online Dupuytren Conference last year was a great success, therre were a lot of good talks and new ideas, and it is great to see so many people from all over the world joining forces to help us. the videos of the presentations can be accessed on the International Dupuytren's Society website. Research is still happening, the RIDD trial results are due to be published soon. If you want regular news via our newsletter, please subscribe. Stay safe everyone.
Thursday, 5 August 2021
Thursday, 29 July 2021
Thge first radiotherapy video is now life! It is titled "does radiotherapy help for Garrod's pads (dorsal Dupuytren's)? It can be found on YouTube. The aim is for a new video to go life every Thursday at 6pm, so keep a watch on our YouTube account! A teaser: next weeks will be about: "When why and how to watch and wait".
We have started recording new (short) videos explaining a bit more about radiotherapy, each based on one question. Dr Shaffer has made a list of questions he gets asked many time, and we are going through them together. The plan is for them to start appearing on our YouTube channel shortly, and in anticipation Dr Shaffer has posted a new blogpage as well: When is it too early to have radiotherapy Preparations for the online Dupuytren conference are well on the way, as the main accent will be on research we are hoping for a few good webinars or online meetings, the abstracts sure look great! As soon as there are videos for patients to see we will let everyone know. Join us on our Facebook group, or send me an email if you have any questions. Take care everyone!