It has been a while

It has been a while since I posted on here, I have been really busy with my daughter (now 3 months old!) and with other things such as my training to become a badminton coach. A lot of people seemed to like the picture of my daughter in her BDS baby grow, you can get those from the shop and there is a link to this on the right. She continues to grow so much each day and I just hope she doesn't have the Dupuytren's genes (should I have it / them).

Things have settled down a little but at work and I have been able to start cracking on with some science thing in my lunch break. 

I have a lot of scientific knowledge in my head and I use that to understand the papers and things that come out on Dupuytren's, it would be nice if others could also understand these papers and I would not have to try and right things in such simple terms, this is a challenge for several reasons. 1) I had spent around 10 years learning science before leaving it last year and 2) I was in it for so long that I never know how much other people know. We are hoping that together and with the help of non-science friends and family we can write a comprehensive scientific report on Dupuytren's that will help many patients understand what it is they have. 

This is something that is going to take quite a while as there is a lot to cover and a lot of testing and then working in the gaps and removing excess information and a lot of things are best said with pictures which we are having to make from scratch. I think that helping patients understand what they have may help them understand why different treatments are used and why others are not recommended. I am also hoping to send the finished article to a contact we have who works in Dupuytren's research, hopefully he can give it the once over to make sure that we are not occidentally lying to you all.

My first week as a trustee

This last week has been my first as a trustee for the British Dupuytren’s Society (here after BDS) and I think it is fair to say that I have settled in to making suggestions and seeing what happens. We have already had 2 meetings since the AGM and a lot has been going on.

This week I have tried to find changes and developments that we can make to help improve the charities visibility and hopefully help to increase the income, not least through trying to come up with ideas for what I can do as fund raisers as surely this is the least I can do for the charity. Fingers crossed that in the next year you see some pro-active fund raising from me, the difficult aspect is getting other people donating as you can’t do so many things in a year and ask the same people to give you money over and over again.

So what are the changes that we are making and hoping to make?

I suppose that it is best to start with the obvious which is this blog. Many people will know that I am quite an experience blogger having come in contact with the BDS through my Ledderhose blog (see BDS website for links) and we all felt that a blog could bring something extra to the charity. The blog is designed to be a less formal way to stay in touch and interact with patients by keeping them more up to date with what we are doing (in our own time remember) on a weekly or monthly basis) and hopefully how these changes will impact the all-important patients (which don’t forget includes us).

Another fairly small and quick change that I have implemented and just needs some more linking is to make a BDS shop – see here http://www.cafepress.co.uk/britishdupsoc. The shop is free to run and was quick to set up and any profits will go to the BDS, so if you fancy a jumper to support us or a bib for your baby, certainly one I will be thinking about, then have a look round and give us some support through not only the profits but also through the awareness you can raise by having a bent finger on your chest.

I think that is it for the main changes this week, but in the long term we really hope to make a difference, from my point of view as a Ledderhose patient it would be great if we could get more recognition of radiotherapy as being a good treatment option for Ledderhose and maybe even one day get it on the NHS, surely having patients undergo a little bit of radiotherapy for 2 weeks in total must be cheaper than performing surgery and managing recovery and physiotherapy and then probably having to perform that again and again because it keeps on coming back? From a Dupuytren’s point of view I am sure there are lots that we can do but one of the things that has stuck with me in the first week is that patients are not getting referred to specialist from their GP until the disease has reached a point where their treatment options are limited and again this means that radiotherapy cannot be used. I am not saying that I think radiotherapy is the be all and end all but I think that is a lot of patients it can work and it can therefore stop unnecessary surgery as it can stop disease progression and prevent surgery.

It also turns out that this week is trustee week, I have only been doing it for one week so I’d like to acknowledge the work done by the past and present trustees as the BDS and perhaps together we can take this charity to another level.