Tuesday, 5 September 2017

Charity Commission, Sabazios and summer?

Long time since the last blog! I have not done much, thanks to Frozen Shoulder nr 4 rearing it's ugly head. The NHS is not much help (well what did I expect?), so now I will take one day at the time.
 
We applied for charity registration with the Charity Commission, have not heard back yet. We applied for a grant to help make the charity better known (Thank you Mr Henk Giele for writing the application).
 
The website keeps changing little bits, additions here and there (such as a bit about the Sabazios cult in ancient Rome) But big rewrites may have to wait till my shoulder tolerates a few days laptop work again!
 
A study on using Xiapex for nodules seems promising, in the right dose the nodules softened up.
And don't forget the RIDD trial, still looking for participants. https://ridd.octru.ox.ac.uk/
 
 Gary and his wife Katie are still doing runs to raise money, though some health problems have forced them to slow down a bit. Health is more important than anything!
 
More soon I hope, for now I wish everyone good health and a return of summer!

Thursday, 22 June 2017

Good News at last!!!

Well friends members and anyone interested, do we have news!!
After four years of meetings, discussions, appeals, negotiations, and not giving up, we finally have good news.
NICE has published their decision on collagenase use in the NHS, and we are happy with it! No more appeals.
It is allowed with some provisions, only if PNF is not suitable, if it does not interfere with a trial ongoing by Mr J Dias, and if surgeon and patient agree on the use.
Of course where you live can still be a problem, different CCG's have different rules on how or when to treat Dupuytren's, but at least it is not a rejection, and surgeons now using it can continue using it.
We owe a great debt to all those who fought for our community, the hand surgeons and therapists involved, everyone at Sobi and the solicitors who helped us (pro bono) with the appeal.
Rejoice!!

Monday, 12 June 2017

Researcher needs patient representatives near Liverpool!

Dear all, I received this email:
 
Dr Elizabeth Laird, from the Institute of Ageing and Chronic Disease at the University of Liverpool, is submitting a research proposal to investigate the mechanisms of the disease and potential targets for therapy.
In the short-term it would be very useful to approach a few patients for feedback on a lay summary of the proposal (attached), their thoughts on the research premise, and possibly to discuss the study directly with the researchers. The submission deadline for this proposal is 28th June, so any patient input we can manage in this short time would be most welcome.
In the longer-term, local patient representatives would be sought for ongoing involvement with the project and developing strategies to share research with the community, potentially establishing a panel to review and input into further research projects and establish links to the patient community.
 
I don't know how technical minded you need to be but suspect not very, so please do respond and offer your input!
If any of you are interested please contact or elizabeth.laird@liverpool.ac.uk for more information or to offer help.
 

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.