Saturday, 3 November 2012

Lots to do and little to update

So at the moment I am up to lots but it results it very little to update with on here. Firstly I am in contact with several patients who I am almost chatting with now rather than just offering advice which is really nice.

As of last Sunday I was made a trustee of the British Dupuytren's Society so I am busy looking up lots of things for them and trying to see what I can do to help, from seeing what we can get for free to ways of raising money, any advice is welcome. You can also follow them on twitter by clicking the follow @Dupuytrens twitter button the right. Make sure to check out the site by clicking the BDS logo on the right and feel free to donate the money will be used to help Dupuytren's and Ledderhose patients. 

One of the main things that I am going at the moment is to look into improving the information that they, I guess it should we, have available on Ledderhose disease and any other areas where I think I can add to it. I am starting with the Ledderhose treatment section and seeing what I can do. Hopefully it will be a busy year with lots of fund raising and lots of awareness generating and patient helping. 

I have also contacted the specialists that I saw on the NHS as they seemed unaware of radiotherapy as a treatment option, I have now drawn their attention to it and asked them to get in touch if they are interested. Would be great if at least they actually read the letter and ideally end up directing patients to the British Dupuytren's Society for further advice if they feel they cannot offer them the best treatment, after all it was only in March that I was being told that all I could do was wait for it to get bad enough that I need surgery. 

I have also written to a local journalist to see if they would like to make a story of this as they covered a Dupuytren's patient who had Xiapex, why not cover a Ledderhose patient that has had radiotherapy. Fingers crossed and then perhaps this can help people learn about the condition. 

I am also thinking about my 1 year post, after all it is only 11 days away, lots of pictures and lots of writing. I am also hoping to have by that day a new edition of the 'Ebook' that I put on this blog, hopefully fully up to date with all the information that I now have about radiotherapy. 

So all of that along with looking after my wife and preparing for holiday in a couple of weeks and Christmas next month I am quite busy...