Saturday, 12 May 2012

Long Ledderhose update

So to start things off I have now posted a new video on the symptoms and risk factors page, this time about the risk factors that are associated with Dupuytren's (and Ledderhose).

For a variety of reasons I have recently been looking at and updating my CV and seeing what I can add to it since starting the PhD and you know what there is lots of great things that I can add from that, the presentation, communication and analytical skills that I have developed for starters but actually I am also finding that this blog and all the people that have helped me out are just as valid to talk about.

What am I talking about? Well ok for starters look at how many page views I get, without updating the blog that frequently I am getting at least 50 page views per day and on many occasions this goes over 100 and is alsmost always over 100 when I make a post and I regularly see through analytics that people spend over 30 minutes browsing the site. But I think that that read out means nothing without looking at the reasons as to why I get that many hits and why people stay on here. I have now had over 1000 visits from alone and several hundred more from

Why do I get hits on the blog? Well the content. A lot of the content on here is not elsewhere on the web. I have interviews with numerous patients who have had many different types of treatment for Dupuytren's and Ledderhose and whether it be radiotherapy or verapamil you get to see things from the point of view of the end user and not what medics or companies are telling you happens and I think that is what a lot of people want to hear. I have also talked in depth about all the different treatments to the point that the British Dupuytren's Society got me to help them with their Ledderhose disease content - mainly here and here. There are official sites that discuss this kind of thing but I have them coming from a personal point of view rather than from a professional point of view. I also have all the science where I have loads of complex ideas that I have tried to simplify so that all can understand. Now whilst I have no proof that I have been successful in this I have not had any complaints or questions on those pages asking me what is going on because they don't understand the point that I am trying to get across.I have also learnt how to make videos, this is a skill which I didn't really have before but I am now starting to put them in old posts in the hope that they might help explain things. I would like to make more of these so if you can think of something that you would like me to cover then let me know.

So we have all helped by contributing to the interviews, telling me about your treatments so that I can post on them and hopefully understanding at least some of the science and if you don't then please ask questions so I can make sure that everyone can understand it.

Overall I have to say that I am very proud of this blog and the people that I have met through trying to expand it, when I first started it was all about me ranting about my foot but then it became much more than that it became about helping and listening to others and trying to make this something that meant when people searched google for Ledderhose they were not just left with wikipedia but had somewhere to go read, learn and if they want interact and talk about it. In my quest to make this as good as possible I have a twitter account to help keep people updated, I have made a logo (which at least to me shows what the site is about) and I have designed a leaflet to try and raise awareness and explain the basics of this annoying and often painful disease.

There are some downsides. Clearly there is a limited amount that I can talk about and I have kind of hit the wall now other than trying to increase the number of interviews (of course many people are very busy and don't want to spent the time to answer my questions, which is understandable) and trying provoke discussions on here and on the forum ( so that everyone can get the help they need. Of course there is a great forum already out there where there are lots of helpful people it is just harder to find if you don't know that Ledderhose and Dupuytren's are realted. I am still posting about updates in my situation but at the moment not much is changing as I am still in pain, still using a stick, still getting pain in my hip, still taking pain killers that send me to sleep, still struggling along trying to do what I can and starting radiotherapy on 21st May. 

Now it comes down to trying to raise awareness of the disease so that others in the future have a better experience at getting treatment and can have another useful resource for them to visit. I have the leaflets although I am lacking in motivation at the moment I would still love to write a book where the main character has Ledderhose but have gone off my old idea of making it the key storyline. The blog has been a great experience and I have learnt a lot about blogging, Ledderhose & Dupuytren's treatments and science, about the lives of other patients with the disease and about trying to make the most out of a bad situation (with a lot of help from my wife) as without this painful thing in my foot I would not have gone through all of the above and I would not have met and potentially helped lots of people and I also now get out of doing a lot of the house work (though actually I liked doing this to see the big smile on the face of my wife when she got home).

So back to me. It is now only a week to go until I start radiotherapy and I really hope that is helps me. I will be reporting in detail on here and I hope that it is useful for anyone else considering getting this done in the UK or indeed anywhere else in the world.