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.

Thursday 4 April 2024

An Update on Me - 12 years post Radiotherapy

I wanted to give a detailed update on me and my Ledderhose and more around my lifestyle in general. 

For new visitors please read the following post to see my background.

In short my journey prior to successful treatment:

  • Noticed lump in foot around 2009.
  • Got sent for physio! And was rightly told that they could not help.
  • Advised to wear supportive running trainers. Note I weighed around 18 stone, so at 5ft 9 this didn't help.
  • 2011 started to become more painful. 
  • Had Steroid injection and it helped for a few months then it came back angry.
  • NHS Foot specialist advised that surgery would likely result in it coming back so not worth it except as a last resort. 
  • I was working towards a PhD in Cancer research so delved into the science and started this blog. 
  • Referred for and fitted with orthotics which helped a little as well as having diagnosis confirmed with an MRI. 
  • Became super painful but told other than surgery, which is a last resort, there was nothing the NHS could do. 
  • I started using a walking stick to get around and take some weight off of my foot. 
  • My wife found radiotherapy with Dr Shaffer as an option. 
  • I was treated in May / July 2012 and combined with moving away from the lab to a desk job I found myself recovering quickly.
  • Throughout 2013 my foot continues to improve to the point where you wouldn't realise I had it. 

The Ledderhose:

So firstly the Ledderhose. In terms of pain I am still in a great place, I have very little if any pain from the Ledderhose disease. I can sometimes feel an ache around where the nodule is when I have been doing a lot of running but nothing prohibitive. Now you will notice that I said where the nodule is... In the last 6 months or so the nodule has grown again. So it was very small and dormant for the best part of 9-10 years and in this last year it has grown a little. It might even be bigger than it was before however, even with my running, it is not causing pain above 1/10 let alone the 9/10 I was getting on every step before.

In terms of my journey since the start of 2015 I collected a whole bunch of patient data and presented the results at the Dupuytren's Symposium in 2015. That was a great experience, I got to meet so many specialists and live blogged about the conditions (which was surprisingly popular!). 

My Diet:

Something that can be very divisive but I am convinced that a proper human diet is high meat, low carb and that this isn't even bad for the environment or the animals. This might sound crazy but I, and many others, have done the research and there is just so much money in food and keeping people sick that it is had to impossible for the required research to disprove it to take place. You air these views and are seen, at best as being eccentric and at worst as a conspiracy theorist. Speaking from my own experience, and from many others I have spoken to, the lower in carbs and plant matter people go the better they feel. There is a transition period and a mindset adjustment but it just works. 

Now it might seem odd to mention this on a blog about a foot condition? Well I just wish I knew what I knew now back then. If I had weighed 10 stone (which I do), rather than topping the scales at 20 stone(which I did), had I known how great carnivore (zero carb) can be for auto-immune and its anti-inflammatory effect, could I have saved myself the cost and impact of the radiation therapy and years of stress? My gut tells me probably not but my brain and the results I have had suggest that it would have made everything much smoother, more effective and honestly I do wonder if I had been low carb my whole life if I would have even developed the condition. 

I say that because of the massive impact that reducing carbs has had on my physical health and that of my wife. I think it is shocking that we are being pushed more and more onto a plant based diet and despite these shifts the world continues to get less and less healthy. Anyway I won't say anything more on this other than to say to get in touch if you have any questions. 

Exercise:

Obviously back when this condition was bad I could barely walk and my physical activity was massively hampered. Looking back I wish I had done some weight training or something but motivation was severely lacking. Now I am one of the fittest people I know. I do a lot of weight training and am comfortably able to do pull ups etc. and I am one of the the best local runners, normally finishing in the top 3 at my local parkrun. In fact out of the 15,000+ people that have done the parkrun I am in the top 75 of all time. I try to focus on the process and mental health as well and last year ran 2750 miles, many with my daughter on her scooter, with my wife or with the dog. Since my treatment all those years ago I even (badly) completed a marathon for the British Dupuytren's society and still proudly wear my BDS running vests now. 

The Treatments:

Honestly not a huge amount has changed. I would love to be able to say there have been advances and there are some great new injections but the treatment landscape looks much the same now as it did back in 2012. Hard to believe that it has been 12 years.

Finally...

I am now hitting the 12 year anniversary of starting radiotherapy with Dr Shaffer. Having that radiotherapy was one of the best decisions of my life and something I am so grateful for every time I step out the door for a walk or a run. Honestly I am concerned by the growth I have seen over the last 6 months but also optimistic as the lack of pain I am suffering. 

In the future I am hoping to keep on running, getting quicker and pushing through what I ever imagined possible 12 years ago. Hopefully it provides some inspiration and hope to other patients and I continue to keep an eye on research in the hopes that better treatments come along. If I get the time I will try and do a review of some of the literature but accessing and understanding it is much harder now that I am not longer in science. 

Happy feet everyone and please get in touch if you have any questions. 

Thursday 28 December 2023

It can get better

I haven't posted yet in 2023 and wanted to remedy that. It has been a very busy year, mostly with running! I have discussed my running before but this year it has gone to another level. A Ledderhose patient that had to use a walking stick and weighed at least 19 stone at one point (probably more) is now one of the better runners in his area. I will try and make sure I post about my running elsewhere.

I am sure this won't mean much to people on here but I have broken my records for 10k, 5k and the half marathon with a sub 38, sub 18 and 1:25 (on a tough course) during this year. I have come 1st!!! at parkrun 4 times this year and when racing it (it is a run not a race but that doesn't stop us) have not been outside the top 10. 

My proudest achievement this year is running 2500 miles, a few years ago I attempted to run 2191 miles to raise money and awareness of the British Dupuytren's Society but I failed due to injury. This year I have surpassed 2700 miles and just had an amazing year. I won't rave about my running any more, I will post about that elsewhere but needless to say that if you are currently in pain with Ledderhose there can be a light at the end of the tunnel and people similar to yourselves have found a way out.