Thursday 1 December 2011

Frustration

I have been having a frustrating time recently, things are just building up and there is nothing I can do, I would love to be able to go out and play badminton or go for a run on the treadmill, I wish swimming was more convenient and didn't give me ear infections but I might have to make the effort to go as just being on my feet for a little bit longer yesterday meant that the pain started to creep back in.

Still my foot appointment is not far away now, it is this month :-)

The other thing that is frustrating is that it is in my nature to research and to try and find out details, so I have done all the searches I can think of for, Plantar Fibroma, Plantar Fibromatosis, Ledderhose Disease and looking at dupuytren's contracture (related condition in the hand) and because Plantar Fibromatosis in particular is considered to be a rare disease there is not that much out there for me to find and so when I do a search thinking what can I find out today I find out nothing new, just the same old stories of failed surgery or how this is not the best option, or how there are lots of other ways to treat it in Germany etc etc and as for research again Plantar Fibromatosis is a rare disease and that means less funding into research which means less chances of papers coming out with useful information in them...

Doing a Google search for "dupuytren's contracture" gives 358,000 results, "plantar fibromatosis" on the other hand gives 48,600 and well cancer, justifiably, gets 160,000,000 results. If you then look at this in terms of research by looking at the number of publication in PubMed (I am not going to bother searching for cancer because I can do that at work and know it will gives many many results) and "dupuytren's contracture" gives 1228 articles, "plantar fibromatosis" gives 111 (not a good number for a cricketer :-P) and doing a search for Ledderhose gives the mighty result of 30 articles, 30, no wonder there is not that much help out there if that is all the research that is going on. Of those articles on Ledderhose only 4 have been published since the end of 2008 and for plantar fibromatosis I count 8 since the end of 2008.

As I have said before I have found a forum where people do discuss the above diseases, although mainly aimed at dupuytren's contracture there is an are for those with Ledderhose and considering a lot of people end up with both and that dupuytren's contracture is the more common of the two I guess it makes sense that it is geared towards them. I guess maybe because I am suffering from it badly at the moment I want to talk about it lots but I have noticed that the forum is not that active, there are maybe a few posts a day and most of these are helpful bit I guess I was hoping for a bit more activity and a bit more just a bit more.

3 comments:

  1. Have you found any centres where research is going on into Ledderhose?

    The Old Bag

    ReplyDelete
  2. I will have another look later on and see exactly what I can find, however when you look at most of the publications that have been released on PF they tend to be case studies / trials or even about individuals that have been looked at in hospitals etc, I guess this is the best way of doing it but working in scientific research myself I would like to find places that do cellular research on this stuff (I know some is done because I have referenced one of those papers in my first post)

    ReplyDelete
  3. The paper that I previously referenced http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0024050 Has people from multiple places working on it 2 institutes, 1 is in Taiwan and their website is rubbish so I can't work out exactly what they do and the other is in the states and I think the first just used some of their facilities for some of the experiments.

    ReplyDelete