Monday, 22 May 2017

News for Peyronie's patients

Earlier this month the American Urology Association had a large conference meeting with specialists from all over the world presenting their latest thoughts and trial results. One of the (many) subjects covered was Peyronie's.
Two interesting and encouraging developments:
One: it would seem that using collagenase (Xiapex) is safe in an earlier stage than so far indicated, so maybe patients can get relief earlier and may not have to wait till the condition is stable for two years. This would be off licence treatment, not supported by the manufacturer at this stage. But is it hopeful!
This was presented by Dr James E Anaissie from Tulane, New Orleans.
The next very interesting poster was by our trustee Mr David Ralph from London, who has trialled a shortened course of Xiapex injections for Peyronie's, which will give faster relieve and be less costly. The results were excellent, again this would be off licence, not what the manufacturer recommends, but it does seem effective and offers faster results!
 

I am very happy to see progress is being made in how best to treat Peyronie's patients. Thank you to the doctors devoting their time to this!

Monday, 8 May 2017

On May 8th we celebrate world Viking day.
The results of last month survey on where our families came from will be published, a new website opened, radio interviews given, and we try to raise awareness of the disease. This is organised by SayCommunications, at Sobi's request, and in collaboration with the BDS.
The new website can be found here: http://www.thisisdupuytrens.com/home/
And check out the map of Dupuytren families:
 

Saturday, 15 April 2017

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

Monday, 6 February 2017

BSSH days over, now we need a secretariat

Well the BSSH days are over, it was a busy time but very good to be there. So many aspiring hand surgeons, such young people who are working hard to learn how to treat us, kudos to them all. That is dedication for you.
And I hope now a lot more know that their patients can approach our charity for some emotional help and reassurance. A big thank you to Ian Ireland for spending a whole Friday helping us, chatting to doctors and other exhibitors and spreading the word that there is a Dupuytren's charity.
And it was good to meet our trustee Mr Dominic Furniss who was there to share his expertise with the next generation.
I also met a few doctors who treat Dupuytren and who's name was not on our doctors and clinics page yet, that has been rectified!
So now forward with the charity, Gemma has sadly left us as the funding has been withdrawn, so ideally now we are looking for one or more volunteers to take over her secretariat job.
And if we could find patients willing to organise get-togethers in their area, that would be so good! We could have groups of patients meeting up and chatting about their experiences in different areas of the country. I am considering a 'North West England' patient group, maybe just to meet once or twice per year in a park or pub, for a chat and a lemonade.
Please Tweet Facebook email or get in touch any other way you can.

Monday, 16 January 2017

Getting ready

We are getting ready for the BSSH days! I have bought a conference table cloth and a table runner (and after that found out you can get special conference table cloths printed), I have designed and bought 200 new leaflets, (and a big thank you to Iain Reid who made the logo look better!). We have two volunteers, Ian Ireland for the Friday and Stephen Jones for the Saturday - I can't wait to meet them!
The trustee page on our website now has pictures of all trustees, and tells you who helps in what department.
I am getting somewhere designing an 'aftercare and physical therapy after surgery' leaflet - ok, the name will need shortening a bit. I need to take some hand pictures to show the exercises, but where you need two hands for the exercises I can't take a picture as well, so I will find some help for that.
The weather is atrocious, but fortunately that is not our responsibility. It just means more aches and pains for a lot of people, and especially for those with Ledderhose who may have trouble walking anyway- please be careful!

Thursday, 22 December 2016

NICE radiotherapy guidance


NICE has put the latest Radiotherapy guidelines on their website. It will remain available on the NHS for Dupuytren's but limited to clinics that can and will perform audits of the results. There are no safety concerns for the treatment, and repeat treatment is a possibility. So for now not much changes, and clinics that perform RT on the NHS should be able to continue doing so as long as the patient's CCG pays. We are happy with this decision!

Monday, 5 December 2016

News and another interesting article

Another good article has been published online, about the results of surgery for Dupuytren's. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010143.pub2/epdf   The main writer is Mr J N Rodrigues, it is part of his thesis study.

On Wednesday 7th Dec we are hoping to have the next trustee meeting, it will be partly face to face and those who can't come will try to connect via Skype. Our Secretariat Gemma has arranged it all, and it must have been a lot of work! Mr David Ralph has kindly offered the use of his office for it. It will be good to meet some people face to face!

We had the next meeting with NICE about the use of Xiapex, now we are waiting for their next decision. I have told them that in the charities opinion Xiapex is the last hope for some patients, and therefore we do not want a blanket ban, we will be happy with limited guidance. But we just have to wait and see now. The manufacturers were well represented, and NICE had one hand surgeon (one of our trustees, but I am not sure if he represented us or the BSSH) on a conference call. Thank you Mr Henk Giele for taking the time to join the post-appeal meeting!

The decision on radiotherapy is due soon, we will keep you updated for that. For now, have a good day, wrap up warm if you go outside!