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.
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.
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