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.

Tuesday, 27 September 2016

A Ledderhose (and Dupuytren's) perspective of DisneyLand Paris Half Marathon

This last weekend I have had the pleasure of going to DisneyLand Paris in part to run the inaugural DisneyLand Half Marathon and in part to see the sheer joy on my 3 year old daughters face as we meet the characters go on the rides. Given my role with the British Dupuytren's Society and my history with Ledderhose I couldn't help but think of things from a Dupuytren's and Ledderhose point of view. 

Dupuytren's:
The trip over from the UK to Disneyland was very smooth and the only thing from a patients point of view that I would comment on is the ease of dealing with 2 suitcases if I had Dupuytren's. Admittedly most patients do not have a 3 year old daughter so it would only be one suitcase for me and one for my wife however I think the point it still valid that carrying or pulling a suitcase if you have Dupuytren's in both hands would not be fun. Other than the usual daily problems with Dupuytren's I don't think that there would be any additional problems, none of the rides require you to hold on to things (other than a Buzz Light Year shooting game) but the rest are Dupuytren's friendly. 

Ledderhose:
Now Ledderhose could be a bit more tricky. As we were hiring a buggy I noticed that they also do wheelchair hire but this is not cheap and would not be feasible for longer stays but I imagine you would be able to take your own if you had one. If you didn't want to use this facility there are then lots and lots of queues and standing in line my foot did hurt a little bit but not much. You would be ok if you could get a Disney disabled badge which basically allows you to skip all the queues but I do not know what the requirements would be for getting one of these. 

The other complaint I would have would be that the trip back on the Eurostar from Disney to the UK was poorly organised and at one point we were, for lack of a better word, penned in to a fairly small area with no seats, as a Ledderhose patients that would have been a nightmare. 

I do or at least I did have a folding chair which would have helped in both situations although I don't think they would have liked me to have taken it on to the rides but most allowed backpacks so it could have worked.

The weekend itself:

The weekend itself was amazing and we all had a great time. My daughter loved the Disney Castle, the characters, the rides the shows and her little kids race. 

My wife and I also took part in the Half marathon which was great, the first 5k was around the 2 parks and there were loads of staff and characters cheering us on. The course was more hilly than I was expecting and I am not quite in the shape for a PB so was amazing to actually be on for a PB until 9 miles in at which I knew I could either give everything and scrape a PB or keep something in the tank for the remainder of the weekend, I took the latter option as I have another half marathon in November, hopefully the conditions will be good and I can get a PB then but I imagine it will be a while before I get the chance to go to DisneyLand again. My watch time was somewhere just under 1 hour 38 minutes and out of the 11,000 runners I think I will be in the top 500 if not higher which is pretty crazy (still waiting for the official results). 

Overall we had an amazing time but I really am not sure what I would have done (other than not run the Half Marathon) had I still been in a bad position with my foot. We probably wouldn't have gone. On the plus side keeping my feet warm has always helped with any pain that I have had and I managed to get some lovely warm slippers which I thoroughly recommend for any patients that find that warmer feet help.

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.