Dupuytren Award 2017

From the International Dupuytren Society about the 2017 Dupuytren Award:
We received many and very good applications making it a difficult decision for our Scientific Advisory Board to select a winner. This is excellent news for Dupuytren’s research and we are looking forward to more papers about this challenging and multifaceted subject!
This year two categories are awarded, “Basic Research” and “Clinical Research”. The winners of the International Dupuytren Award 2017 http://www.dupuytren-online.info/dupuytren_award.html are
Basic Research:              
·         Sabrina Koh et al. "Embryonic Stem Cell–like Population in Dupuytren’s Disease" Plast Reconstr Surg Glob Open 4 (2016): e1064

Clinical Research (two papers received exactly the same number of votes and both receive the award):
·         Jeremy Rodrigues et al. "Functional outcome and complications following surgery for Dupuytren’s disease: a multi-centre cross-sectional study" J Hand Surg Eur (2016). pii: 1753193416660045    
·         Joakim Strömberg et al. "Comparison of Treatment Outcome After Collagenase and Needle Fasciotomy for Dupuytren Contracture: A Randomized, Single-Blinded, Clinical Trial With a 1-Year Follow-Up." J Hand Surg Am. 2016 Sep;41(9):873-80.
Congratulations to the three winners for their excellent papers! And thank you very much to all of you for your great contributions to researching Dupuytren disease! We are looking forward to new papers and new insights in 2017. There is still a world to explore, in cell research, in pathogenesis, in improving and comparing therapies, and in finding new therapies, and ultimately even a cure for this disease!
The International Dupuytren Society would like to thank all members of its Advisory Board for working through the applications and carefully choosing the winners.
This Award is exclusively funded by donations and not supported by commercial companies.

Wolfgang Wach
International Dupuytren Society

Letter to my MP

 Two month almost since my last blog! In that time NICE has considered all comments we send them (and the BSSH send, and other people as well I hope) and they will make their decision on 9th February. We have approached two MP's, the first one asked a written question and the ministers reply had nothing to do with the question asked, so then I approached my MP about the fact that patients would like a choice of surgery or no surgery, and in Wales and Scotland the collagenase injections have been approved. Yvonne Fovargue MP has passed our concerns on to the Secretary of State for Health and the Shadow Health Team, so we'll see what that achieves.

 

Gary has been on local television and in his local papers promoting awareness of Ledderhose and Dupuytren's and radiotherapy for these conditions.

 

Xiapex has been given European approval for use in Peyronie's, seeing that multiple injections are needed I can't see it being available on the NHS any time soon..

 

The IDS has had their AGM, that means it will be time for ours soon. As the last one was a complete wash-out, I am not looking forward to this years meeting. But I suppose we have to do it. Sometime soon. So please see this as advance warning, anyone who would like to join in (I may try Skype this year, or Google Hangout again) please let me know.

Wintertime started

Well, today winter time has started, it is dark and cold, and I bet you are all feeling it in your hands and feet. Keep warm, don't be ashamed to wear mittens if gloves won't work anymore! For me men's gloves medium to large has been a good options for a long time, as womes gloves always have thin fingers, and bendy ones won't fit in them.

Two weeks ago almost we had our first training day in London, Gary, Henry Orton and I were there. The morning was media training, how to answer questions and try to get your message accross, the afternoon was about Wordpress for when we move the website over. A second day is planned but no date yet.

The 14th October was another morning in Manchester for the next NICE appraisal meeting, this was an extra one but fortunately I happened to have that week off work so I could attend. The team wanted extra information before making their decision. I hope they decide in favour of patients being able to have the Collagenase injections on the NHS if they have a suitable contracture.

My computer problem with my virus scanner not allowing me to access the website is fixed, after the latest AVG free version update I can now keep the program running while I manage the site. This means I can spend a bit more time on it, so I have made some updates on the History page and of course the Doctors and Clinics page, websites and doctors addresses seem to change weekly.

We are thinking about a new logo, the present one was borrowed from the International Dupuytren's Society and can apparently in some countries or societies be seen as rude, a hand with one finger bend down. We must all be rude people, as many of us go through life like that! But anyway, I had seen a picture I really liked, enquired about buying it and got an email back saying we could buy the oicture but not the copyright, so we would not be able to use  it for logo or modify it. No use to us, so back to the drawing board for that one. I will keep you informed.

Gary has been busy with his surveys and is setting up a section on his blog for patients life stories, please feel free to check it out. http://ledderhose.blogspot.co.uk/ 

Anyone who is good at sketching or drawing feel free to have a go at making a logo, ideally somethng with a hand (with one or two bend fingers and a visible cord) and a foot with a lump. Not much to ask is it?

Anna

I just had a week holiday sight seeing in Edinburgh. Beautiful city, very tiring walking as the street go up and down constantly. But it makes for lovely panoramic views. And hardly any rain, that was a bonus! We spend the last day of the week at the Royal Highland Show, loved it. Seeing the animals, all different breeds, all healthy and well. Agriculture is so important for the country.

My mother asked me if the eye-roller with caffeine that I have been using since January to try and slow down the nodules in my fingers is making a difference. (http://www.ncbi.nlm.nih.gov/pubmed/21612641?dopt=Abstract) I can't say really, don't know how fast they would have grown without it. But just the idea that I am not waiting to go worse but doing something is a positive thing, so I'll keep using the roller.  And drinking tea and coffee. And now and then a glass of red wine for the anti-oxidants, or having a curry for the turmeric in it, (http://dupuytrenfoundation.blogspot.co.uk/   see Saturday Sept 24, 2011 entry). Don't like green tea, or ginseng in food, so I'll skip those two.  On the whole it makes for a varied diet, especially if  I add some fish for the fish oil as well.. Try what I can to subdue this condition.

Time for another cup of black tea now, before Judith and I are going to talk via Google hangouts to discuss a few articles on the natural progression of Dupuytren's, as we need a bit more ammunition for our reply to the BSSH about radiotherapy. At least we are making good progress there, and Wolfgang of the International Dupuytren's Society and Mr R Shaffer (http://www.dupuytrens-radiotherapy.co.uk/about.php have promised to help finding articles or even editing the letter ( Wolfgang, he is far better with computer things than I am, I did not manage to get our logo where I wanted it in the letter, he did)

Anna

working on the wbesite still...

It is time for an update on what is happening. 
Over the last few weeks I have spend most of my time downloading pages from the BDS website, editing the text and the hyperlinks, only to find out  a few days later that all the hyperlinks edits I made had not been saved, even if I did them in Word 2007. Still don't know why. So I had to do it all again in OpenOffice.
That seems to have worked, and I have now emailed the page to a very nice person who is putting together a new website on his domain for us.
We are not sure yet if we are going to move the tag from 1 site to the other so we can keep the name the same, or if the new site will have a slightly different name. That only needs to be decided once the new site is set up with all links working etcetera.
I have been in contact with Wolfgang Wach from the International Dupuytren's Society, we still need to reply to the BSSH on their stance against radiotherapy. We have not been able to find some of the artciles they quote, even the radiologists we asked have not found them. And it's not easy arguing about the conclusions in a text you have not read. I will give it another try later on.
Healthwise my frozen shoulder is playing up still, I am covered in bruises from the physiotherapy and even my physio does not understand why my shoulder still won't move normal after all the treatment I had. I would not recommend frozen shoulders to anyone!