Welcome

Welcome to the Ledderhose disease (plantar fibroma) blog.

My name is Gary and I am the author of this blog. I am a ledderhose patient from the UK. I am an ex-scientist and hold a degree in Molecular Genetics and I try and put this experience to good use exploring this condition.

I have pages here about the treatment options, patient experiences including my own, insights from medical professionals, explanations of the science and whatever else I think may be useful for fellow patients. Through the blog I have made contacts with many patients, professionals and charities and now work as a trustee for the British Dupuytren's Society.

Hopefully you can find the pages you want using the navigation menu above or use the search box to look for specific information.

Hope you enjoy reading the blog and please contact me at ledderhosedisease@gmail.com or leave a message on here to get in touch. All information will be kept private unless you tell me otherwise.

Thank you for visiting.

Sunday, 26 June 2016

A great day

I don't do many personal posts on here now that my foot is much better however I wanted to do a post about yesterday. It was a great day but the thing that struck me on the way home at the end of the day was how it was pretty much a normal day, it is amazing to think how I no longer have to consider my foot and I am still so grateful that I received radiotherapy.  To puts things in contrast, this time 4 years ago I was between by 2 weeks of radiotherapy and probably at my worst or just coming down from my worst as the radiotherapy started to kick in. I was in the last week of my PhD before giving it up due to the Ledderhose and yet to find out about getting my current job, so it was uncertain times. My wife (then of 4 months) was self-employed so things in our life we far from solid and we knew we wanted to start a family. It was during this time that certain things got to me, I could no longer give blood until they were happy the radiotherapy was over and done with, here are a couple of posts I did around that time. 



Anyways back to yesterday. Every weekend starts the same way for us, in contrast to how things used to be we always head off to our local parkrun. For those that have never heard of parkrun it is a free weekly timed 5k and there are hundreds of them round the world. It is run by the participants who volunteer and everyone chips in, it gives a great atmosphere and the support is phenomenal. Yesterday was one of the few attempts I get without pushing my daughter round in the buggy so I knew I was going to run hard, to my disappointment the course was changed at the last minute due to flooding on certain sections of the route and the clouds disappeared before the start and it got hot quick. 

I am not a super fast runner but I am getting quick, I have run under 20 minutes for 5k on several occasions and finished 7th or 8th several times. We all started off on the new route and somehow there was a group of 5 of us at the front, I was in third and felt good and moved into 1st after 1/4 mile and held on to the lead until around 1/2 mile in. The guys I was running with are the ones I usually see run off into the distance and I was feeling good. The front 2 started to pull away and the guys in 4th and 5th dropped back a little but. So suddenly I was on for a podium, now parkrun is not a race it is a run but I am sure that everyone at the front likes to get the best position they can! At the half way stage I was still in touch distance of the front 2 although the fastest guy started to break clear. My wife saw me around this point and shouted "You're in 3rd!!" .I went past the guy in second but knew there were 2 others catching me, I held one off for a little bit and then could hear the guy in 4th coming, luckily I kept him behind me until about 100m to go when I kicked for the end with by far the fastest finish I have ever done. 

The time was not a PB, in fact the quickly arranged course was slightly long, the conditions were not fast as shown by the fact that the 4 people finishing around me have PB's much faster than mine, yet I had come 3rd. A parkrun podium doesn't count for anything but I felt great, I had gotten on the podium, thinking back to where I was all those years ago nobody would have guessed I would end up coming 3rd out of 212 people!!! After finishing I jogged back round the course to find the members of the running group I have just joined and ran back round to the finish with them, they were all in great spirits supporting a member on their 50th birthday and were delighted for me getting 3rd place. 

So a great 5k run was actually just the start of my day. My wife had tickets for us to go and see a musical show in London. I am not someone who likes to watch musical shows on the TV or listen to the music at home but the show we went to was fantastic and we both really enjoyed it, especially as our seats got upgraded and we ended up in some brilliant seats. To see the show though we walked to and from the station at both ends which was a lot of walking but it all felt normal. 

Whilst all of this was going on I was in contact with a couple of patients and putting a couple of patients in contact with each other as they share a common goal. It is nice to have had such a great week and for everything to have been normal. 

Thursday, 26 May 2016

A year since the symposium

It is crazy to think that it was a year ago now that I was visiting Holland for the Dupuytren’s Symposium. The event was great and I did learn a lot and certainly met a lot of interesting researchers and doctors who really seem to care about the patients rather than the kind of doctors that will just fob you off. For example most were willing to listen to the argument for radiotherapy rather than just going against it because it is radiotherapy without listening the evidence for it. Back then I was very interested in the molecular level pathway research as this is the sort of thing that I used to look at back when I was doing my PhD.






Honestly though I can’t remember a huge amount of what I saw back then and even cannot remember some of the presentation that I gave! Therefore this week I am hoping to get the chance to look through some of the notes that I made. Last year I was going a session by session update on the blog and this really gained a lot of attention, I encourage anyone new to the conditions to go and look at the information on there and watch any particularly interesting videos as they are all available on YouTube (mine included).

The conference was a very interesting experience and something that I am hoping to do again, time and money permitting in the future. It would be great to come up with some collaborative project that we can all work towards for the next conference, we have so many great and intelligent members on the various Facebook groups that I am sure we could design and successfully implement a project that could make a big difference and at least as patients we can feel like we are contributing.

Next year my big aim is going to be to try and raise awareness and funds for the British Dupuytren’s Society through my (with my wife) 2191 challenge. My plan for this year is to work on that. I have a few essential things set up such as a dedicated blog and a donations page but I would like to get in touch with media outlets and see if I can get any of them interested in promoting the campaign to raise awareness. I have a few ideas as to places that I can try and there are the contacts from when I was previously interviewed by the BBC. Several people saw that interview so it would be great if I could get on to the TV again. There are of course running specific things I can do. There is a magazine that I read that has an article on someone who has gone from fat to fit and I think I count in that section. Any ideas on anything I can do would be appreciated.