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.

Thursday, 4 August 2022

Survey and Focus Group for US Ledderhose patients

Hi Everyone, the survey and focus group did not get as much interest as we were hoping. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it.

Please do take part and help gather some data on Ledderhose and its treatments. Equally interested to hear in the comments why people are not taking part / completing the survey.

Saturday, 21 May 2022

10 years since radiotherapy started

I got a reminder on my phone this morning, it is now 10, yes 10!!! years since I started radiotherapy in Guildford with Dr Shaffer to treat my Ledderhose. It is crazy thinking how much things have changed and although I still look back at those time I have come so far. I was out walking the dog for over an hour this morning and for me this was a lazy Saturday morning as I didn't follow it up with an 8 mile run including parkrun. When I was back suffering with my foot and weighing the best part of 20 stone who would have thought that 10 years later I would fast be approaching 200 parkruns. 

It is safe to say that I still consider radiotherapy one of the best decisions of my life, it was quite literally life changing and so much of my life now would likely be different if I had had surgery instead. In a typical day I run with my daughter on her scooter to get her to and from school, take the dog for a walk or run (or two), often go for a run myself, play badminton not to mention the mundane things like I am the one who does the weekly shop round Tesco, no way would I have nominated myself to do that back when I had my bad foot. Tomorrow we are going on one of our regular trips round Legoland and whilst a day on my feet can cause my foot to ache a bit the next day I can see the joy and happiness on my daughters face and think that without RT we would certainly not be able to go regularly. In fact we go so much she asked for it as the theme for her birthday this year, so it is not just my life that is completely different. 

I will forever be grateful for the support and help my friends and family gave me back then and since. 

10 years is a long time, I have lost a lot of people in those years, many of whom helped a lot either by financial and or emotional support during this time but we will never forget that help and the difference it has made to our lives.