Nice comments send

 Well the NICE comments have been send on, the last date to do this was 28th November. I have send them one page with my comments on the process, and two pages with patient comments. Will it make a difference? Probably not, but if we don't try we'll never know. I fear patient preference, easier recovery and less scarring is not as important as saving money at the moment.

 We have had help from Linda ( thanks Linda, you're brill!) to get questions asked in parliament, and I have emailed lots of papers and even Embarrassing Bodies to see if they want to do a follow up. A few declined, most did not even answer. But Gary has done one interview (they cut out what he said about NICE and Xiapex but it's good for Ledderhose awareness) and we may have another local newspaper near Gary interested.

https://www.facebook.com/video.php?v=10152868506228648

 On a more positive note there is a clinical trial starting in London treating Peyronie's patients with Xiapex, https://clinicaltrials.gov/ct2/show/NCT02267460  so anyone suffering from nodules and curvature in the penis check out if you could be eligible to join!

 When all this is over gary and I will have to start talking about a science page for the website again, to explain about MMP's and Transforming growthfactors and insulin like growthfactors hat are influencing our hands/ feet/ other bodyparts. My problem is that we did not have those when I went to university, and I still can't get my head around what each little product does. But I'm sure one day it will all click in place. (fingers crossed, lol)

 For now I will search a bit more for news on Dupuytren's or Ledderhose, then do some cleaning and after that go out for lunch with friends- my attempt at having a social life! Have a good day everyone.

 

 

It would seem our summer is coming to an end. A shame, because most Dupuytren's patients have less pain (yes I know it is a painfree disease!) in the warmer weather.

We are still trying to arrange a training day for web maintenance, it's not easy getting 3 people tpgether who all have different work schedules. We'll see what we can do. Meanwhile I have collected some more pictures for the editorial we were working on 6 months ago, thanks to the patients who were willing to share their hands!

Judith is busy babysitting and working, so she has less time to do charity work at the moment. Gary and Wolfgang have put together a survey to get some statistics on Dupuytren's and Ledderhose for the next conference. If you haven't participated yet: this is the address http://esurv.org/online-survey.php?surveyID=LKJLGJ_4263bf5d&u=DupLed  

We have also set up a closed group connected to our Faceboook pages, for people who want a bit more privacy when discussing their medical problems. If you want to join just send a request and we will let you in as soon as we notice.  https://www.facebook.com/groups/1462124944043779/?notif_t=group_added_to_group

I a still looking into Asklepios' healings, have bought a few books via Amazon and Abe Books and I'm having a good time reading about heads being cut off and put back on again, women asking Asklepios to help them get pregnant (which he seemed to have no problem doing!) and all kinds of wonderful cures that you could not use today anymore. As soon as I have something to report I will do so.

For now I think our plan of writing a 'science page' to explain about MMP's, growth factors and transforming factors, catenins and all that kind of stuff that influences the cells in the fascia seems to have been put on hold, I still have trouble getting my head around all that stuff so can't explain it in simple terms on paper either. Besides Asklepios teaching are far more entertaining ('please may I get pregnant?' Ok fine, do you want anything else? 'No only to get pregnant' - 3 years later- 'Please may the baby be born as well?' I thought you did not want anything except pregnancy! ) Good reading.

I hope you are all keeping well.

 

Anna