Wednesday, 15 April 2015

April 2015

So much is happening, yet so little is achieved- or so it seems sometimes.
NICE has decided not to make a decision but to ask for more research, specifically in recurrence times. We have decided that is good, it means Xiapex can still be used on the NHS by PCT's that have decided to allow it and meanwhile data are being gathered about it's longterm effect.
There is a new Facebook group, DART- Dupuytren's Advocates for Radiation Therapy, set up specifically to help patients understand the use and timing of radiotherapy, find centres where it can be done and generally discuss if it would be a good option for the disease in the stage they are in and the speed of progression they show. It aims to be a worldwide group, the language is English.
There is some need for a spanish Facebook group for Dupuytren's, as so far the 3 active groups are all in English. Anyone who can help?
Preparations for the Dupuytren's conference are continuing, Gary and I have booked our tickets and are looking forward to learning a lot about the latest research and thoughts on how to fight this disease.
I have been looking into the Icelandic miracles, where Dupuytren's is mentioned in some way. Found one book that should have a mention of it, but it is in old-Norse. If anyone can translate that I would be grateful (and surprised).
I am postponing the AGM we should have had in march ( did not manage to arrange it then for family reasons) and will discuss with Gary when we are in Groningen what we can do about it.
Next post might be after the conference! I hope the weather gets warmer soon and eases everyones hands and feet a bit.

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