Wednesday, 8 November 2017

Peyronie's news and DISC trial

A recent study has shown that men with Peyronie's Disease may be at higher risk of developing certain cancers. This is not good of course, but at least if we know about it, those men can be monitored for early signs and treated as soon as necessary.
Our trustee Birgir Gislason has done a post about it on his website. https://www.mypeyronies.com/peyronies-cancer.html
It is not really surprising, seeing having Dupuytren's Contracture has also been linked to an increased risk, in a study by Zyluk (2015) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3973858/pdf/1897-4287-12-6.pdf
So make sure you talk to your GP if you notice anything that might be suspicious in your body!

On a more positive note the DISC trial is starting, where the longterm results of surgery and collagenase injections for Dupuytren's will be compared. https://www.york.ac.uk/healthsciences/research/trials/research/trials/disc/
Anyone interested in participating please discuss this with your doctor.

Monday, 23 October 2017

surgery app testers needed


We need your help! We hope to assist in the production of an app to help patients prepare for Dupuytren's surgery and the recovery afterwards. This prototype needs to be tested by as many patients as possible, preferably those who have had surgery (fasciectomy), are waiting for surgery or are considering it.
If you think you can help, please reply to the email address on the text below.

Introducing the British Dupuytren’s Society surgery app
The British Dupuytren’s Society is working with the team at myrecovery.ai on a smartphone and tablet app to help people get ready for and recover from Dupuytren’s contracture surgery.
The app is a digital companion for anyone having Dupuytren's surgery and includes videos that highlight the main points for each stage, alongside interactive exercises and useful information for every step of the treatment journey.
The app is in constant development and we are currently recruiting patients for our "Expert Patient Tester Group," to gather feedback, suggestions and ideas for how the app can help people in the best possible way. 
If you are interested in testing the app, let us know or contact the myrecovery app team directly (bds@myrecovery.ai) and they will help you get started. 
Many thanks – we look forward to hearing your thoughts and suggestions!

Sunday, 1 October 2017

Coffee morning in Kent? and ongoing trials

We have a brilliant initiative from a member, Jan Clifton, who would like to meet others with Dupuytren or Ledderhose. She has set aside a morning for this. here are the details:
 If you are interested please reply and I will message you her email.
Coffee morning for Dupuytren/Ledderhose support group
Friday 20th October 10.30am
At Coffee Republic, Bluewater Shopping Centre, Kent
(Unit OU58, Upper Thames Walk between M&S and House of Fraser)
Free parking. Plenty store guides.
Bluewater is off the M25 near Dartford Tunnel. Buses go right into the centre and from Dartford railway station you can get a fast track bus.
 
On another note the Charity Commission wants a lot more information and changes, so that is an ongoing project. I will update once I know more!
 
The DISC trial is now starting in Derby, comparing the longer term results of collagenase and fasciectomy surgery for patients with contracture. More information here.
 
The RIDD trial for early Dupuytren's (nodule stage) is expanding and will soon accept patients not only in Oxford but also in Edinburgh.
 
Please check out these trials!

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!