July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.

 

The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey. http://www.bssh.ac.uk/patients/bssh_james_lind_alliance_partnership.aspx  

 

We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!

 

We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

Another big step forward for the website http://www.dupuytrens-society.org/index.html .

We finally have the new layout up and running, now we just need to find all the faulty links etcetera in this one, and that means going through the whole site, checking everything.. Gary has promised to make a start, and I am grateful to him.

Apart from that we have been working on sharing documents and annotations, Mendeley is a very useful program but it would seem both my and Judith's virus scanners/ firewalls have problems allowing it access all the time. So more wrinkles to iron out there. But I'm sure now my laptop is working almost normal again ( that's why I have not written a blog for a while, it suddenly kept freezing up halfway start-up, turned out the last virus scanner update had corrupted something, so it needed registry repairs and a new virus program- no more free ones for me for a while!)  we will be able to get on with our list of urgent things to do, and maybe even the less urgent or longterm plans.

Auxilium have as from May taken overmarketing Xiapex, they are the manufacturers but so far Pfizer has marketed it in Europe. So that's a big change, we said our goodbey's to our contact at Pfizer and Judith and I have already met our new contact at Auxilium when we were at the NICE meeting. We'll wait and see how good the contact will be and what they can do for Dupuytren's patients, but they seemed knowledgeable about the condition and related problems like Ledderhose, frozen shoulders, dorsal nodules, Peyronie's etc. And even about cellulite, as there is a trial using Xiapex for that. Maybe once plastic surgeons start using it the cost will come down? Wishful thinking.

Time to go and enjoy some sunshine, it is a bank-holiday weekend and my garden is crying out for some attention.

Anna

Christmas market break

We have not been able to do a hangout today because I was at the Christmas market in Manchester. Strange being there early in the morning, it was very quiet, took less than an hour to walk over the whole market. We did not drink any mulled wine as it was too early for that, so the atmosphere wasn't quite there, but I did get what I wanted - Dutch cheese, Dutch liquorice, 'pepernoten', a traditional Dutch treat for 5th December and some smoked eel ( I hope I still like it, my grandmother used to buy me that when I was a child).

So any thought of loosing weight will have to be abandoned, but as Dupuytren's is not generally said to be caused by obesity that's OK.

Not much is happening on the Dupuytren's front, we know Pfizer is loosing the right to market Xiapex next year and Auxilium will take over, but what they are planning to do no-one knows. We had good contact with Pfizer, I hope it will be the same with Auxilium.

Now it's time for some internet surfing to see if anyone produced any interesting articles this week. If I find any I'll post the link on Facebook! https://www.facebook.com/home.php#!/britdupsoc 

A quick update

No hangout with Gary today, I hope he and his wife are ok.
I have found a new facebook friend, a fellow Dupuytren's patient. It is good to be in contact with other people who understand what you go through, and that it's best to joke about it because the alternative sometimes is to cry!
I just found some news on the internet: http://www.drugs.com/news/auxilium-pfizer-conclude-agreement-xiapex-eu-collaboration-41387.html   It would seem Pfizer is loosing the rights to market Xiapex, Auxilium is taking it back. This is likely to influence the contact we have with Pfizer, but I am not sure to what degree. As soon as I know more I'll post it..
Tomorrow first physio on my frozen shoulder, I expect more bruises again after that.
Than a mornings work, and in the afternoon: car MOT. Last year it failed on the numberplates, I hope this year there won't be a problem.

Anna