July 2014

Thanks to Gary for his post, I have been a bit lazy with the blog recently. So now I will let everyone know what I've been up to.

 

Mainly I have been trying to prepare for the upcoming NICE technology appraisal, the next step in NICE deciding whether to allow Xiapex on the NHS in England or not. I have read through 289 pages of statistical language and formulated a comment. I do not like statistics, too much like high school mathematics!

I also found out I will have to be a patient expert at the meeting, instead of observer, as for different reasons the patients who were nominated pulled out, and the others who had been willing could not arrange to come at short notice. Good thing I had taken the week of work already planning to observe the proceedings! Not having had collagenase injections myself I hope I can give a patients perspective, and explain to the comittee why some patients prefer an injection to surgery. I think I can, having had surgery twice myself anything has to be better that offers a faster recovery and return to normal life, even if it might have to be repeated sooner than surgery.

 

I have also been searching for old texts about Asklepios, or Aesculapius (the ancient Greek healer after whom the doctors Aesculapian Staff is named), as he is supposed to have healed someone with Dupuytren's by touching or massaging their hand. That has not been easy, I send out lots of emails and finally have been pointed toward a book that may help me. Available to read in the Wellcome library in London, but also for not too much money from Amazon, and that way I can take my time over it. So I am waiting for that to arrive, coming from the USA it can be a few weeks.

 

Dupuytren's has been named as a disease that can be caused by working with Vibrating tools, so anyone who has done so for 10 years or more and then develops Dupuytren's has a chance of getting disability payment. https://www.gov.uk/government/publications/dupuytrens-contracture-due-to-hand-transmitted-vibration-iiac-report 

 

That is a short summary of news in the world of DD patients. More news can be found on our facebook page, where I tend to post any links to interesting articles that I find. https://www.facebook.com/britdupsoc?ref_type=bookmark 

 

Keep well and look after your hands! (and other body parts)

Anna