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, 24 March 2015

About time for an Update:

Things have been fairly quiet on the blog recently, this is not because of a lack of motivation or anything like that but purely because there is not a huge amount to do nor do I have much time at the moment to give to the blog, though I am always finding time to help any patients that contact me.

I am still busy and active on the Facebook groups, both the Dupuytren’s Contracture one and the Dupuytren’s, Ledderhose and related conditions group. Both are full of useful and helpful patients that are making a different to other patients and all share a lot of information. There is also progress on the patient survey analysis. The Ledderhose section is now all but finished with just a few minor tweaks required. The results are interesting and the symposium is starting to approach rapidly.

Many people of the group raise some interesting questions and some good points, one of the end results of this is that we have created another survey. This is only a short survey and it is just looking at conditions related to Dupuytren’s and Ledderhose. Many people think that there may be links between other conditions that they have and Dupuytren’s, I would guess that in many cases it is just going to be that they are mostly conditions associated with people over the age of 40 and this could be the link. Please fill out the survey at the below address:


The symposium is in May and the details can all be found on the International Dupuytren’s Symposium website and there is now a schedule as to who is going to talk when, I am one of the last talks so better make sure that my talk is interesting enough to hold their attention at the end of the second day.



I now have my flights booked, accommodation booked and I have plans on what trains I am going to get etc. The conference should allow me to make some really helpful connections and have access to the current research.

In fact the location looks really good and I am looking forward to doing the presentation, even if it will be in front of a lot of doctors. Hopefully there will be more surveys on the way or some other way we can all collaborate to generate useful data that is going to help patients. Touching on the location again there is a park nearby so I am hoping to get out for a run whilst I am over there.

On to me…

The running has been going really well since Christmas and combined with a low-carb diet I have not only smashed my 1mile and 3m(/5km) personal bests but I have also lost nearly 4 ½ stone (I still have a little way to go to get down to my target weight but very pleased with my progress so far). I cannot claim that all the excess weight was due to my foot but the weight I am now I have not been since my foot got bad and in another 7lbs I will be the lowest I have ever been as an adult.

I have been very impressed with how well my foot has coped with the excess demands that I have placed onto it and on only last week did it struggle. To put things into perspective in 2012 I couldn't walk without a stick and significant pain, even last year I could feel it after most runs (perhaps to some extent due to the weight?) and last week I managed the following: Saturday: 30 minute hill runs, Sunday: 2 hours badminton playing 1 hour coaching, Monday: 20 minute run, Tuesday: 2 hours walking and 2 hours badminton, Wednesday 30 minute run, Thursday 1 ½ hours badminton, Friday 2 hours badminton.

At the end of that not only was my foot hurting the most it has in a long time but I was knackered, luckily the weekend was mostly spent resting and now (3 days later) my foot feels fully recovered and I am having no pain at all and will try a short run today and I have badminton again on Thursday. To be fair it is unusual for me to do quite that much and although I am getting fitter it is a good reminder that I need to take my foot into consideration and as much as I want to run a marathon one day I have to make sure that I build up gradually and know that it is something that I may not be able to do. My target for this year is still to run a 10k in memory of my Nan in October, hopefully with continued weight loss and a gradual increase in training I will be able to run this and finish physical pain free.

On the more personal side of life it is hard to believe that in under 2 months my daughter will be 2 years old. Of course I am biased but everyone says what a happy, clever and well behaved girl she is. To us she is amazing and she clearly loves music, dance, sport (watching on TV and me playing badminton) and of course in the Night Garden is a huge hit. I don’t know if knowledge that these is a genetic element helps to drive me to look into this or not but I do know that I don’t want anyone to have to experience what I did with this condition let alone my daughter (something I don’t even want to think about).


As always feel free to contact me about anything relating to these conditions, although the blog is not getting updated as often as I would like I am still here, the patients series will be going still although it looks like I might just update it once a quarter or when I have the time. 

Thursday, 29 January 2015

Plantar Fibroma and marathon running

Today I came across a story, the story was not primarily about Ledderhose but about a brother becoming a marathon runner after his brother died of one whilst running one himself. However the article mentions that the person in question had to have an operation for a fibroma on his plantar fascia. This keen runner still then goes on to run a marathon and then runs it in 2 hours and 20 minutes which is an amazing time for anyone let along someone who has had a plantar fibroma operated on. 


Now whilst I am not planning on running a marathon, at least not any time soon, I am hoping to beat both my 5 and 10k personal bests this year and work towards training for a 10 mile race next year. I know that my body is coping well with running and it is helping my weight to come down.

It would be great to hear from anyone else that has had any treatment (or none) and gone on to do running. I think from my experience the best advice I could give is to make sure you get proper running trainers and make sure they are the right type for you. I need the ones with the extra support on the outside from where I had been putting all my weight on the outside of my foot.