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, 25 June 2015

Radiotherapy doesn't work for everyone?

This is something I have specifically investigated due to someone asking. For this I am using the survey data collected for the presentation and just looking at Ledderhose patients that have had radiotherapy. The question really was how many patients, or what percentage are unhappy with radiotherapy.

To start with I used the same rating system as I did for the presentation, 1-3 unhappy, 4-7 neutral and 8+ happy.

NumberDescription
104Ledderhose patients having had Radiotherapy
10Patients Rating RT 3 or less
29Patients Rating RT 7 or less
55Patients Rating RT 8 or more
0Avg Pain Difference in 1* RT rating patients
-2Avg Pain Difference in 2* RT rating patients
-0.8Avg Pain Difference in 3* RT rating patients
5.3Avg Pain 7 or less rating pre RT
4Avg Pain 7 or less rating Post RT
30Current Pain is worst pain
-2.26Average Pain change after RT (all LD)
58% of Low / Medium patients Male


Of the 104 patients in this group 55, or 62.5% can be included in the “happy” group and I am going to assume that all of these patients would say they thought radiotherapy was good and worthwhile. So then looking down into the remaining 37.% (those that rated RT 7 or less out of 10). Interestingly one questions that was asked was pain level at its worst and pain level now, admittedly I cannot say what order patients have had treatment in but most patients had only had radiotherapy and of those rating it 1* there was, on average, no change in pain level. For those rating it 2 stars an improvement of 2 levels (out of 10) improvement was seen between their worst level of pain and now. In those rating it 3 stars a 0.8 improvement was seen. On average in all patients that rated radiotherapy as 7 stars or less the average worst level of pain is 5.3 and the current level is 4 and only 30 patients out of the 104 would rate their current pain as their worst level pain. Of course it would be ideal to know how long ago these patients had radiotherapy as it may have been too soon to have noticed an improvement.

In all patients the average pain level between their worst and current is a decrease of 2.26 which shows a good improvement, clearly with further analysis it could be determined if this was mostly people jumping from 10 to 2 and 2 to 1 or staying the same or a lot of patients going from 10-8, 4-2 etc. A quick look at the data implies that it is likely the former scenario with there being a wide range of patient experiences, with some like myself jumping from a high pain level down to a very low level and some already being at a low level and staying there. Seeing as the main aim of radiotherapy is to stop progression the fact that there is a good pain decrease on average is a very positive result.

Interestingly when looking at the patients that were less satisfied (rating of 7 or less) I observed nearly 60% of them were male. Given the survey for Ledderhose as a whole is biased towards women, this is an interesting shift and either shows that there men were a) expecting more b) harder to impress or c) do not have such a good reaction to radiotherapy.

The other area that I felt it was worth breaking down was the country that these patients are from. I broke them down to UK, USA, Germany and Other. Note that this is country of residence and many patients from the UK for example travel to see Prof S in Germany. The total number of patients in Germany, UK and USA that have had radiotherapy was comparable and interestingly it seems that those from the UK are mostly likely to react well with nearly 90% of these patients rating radiotherapy as 8 or more out of 10, this fell to 69% in Germany, 55% in the USA and 42% in other locations. This does suggest that Germany and the UK, the locations where this has been available for a little bit longer might be the places to go from radiotherapy. Of course it could also be that us Brits are more complacent and have more easily given a higher rating than those in other countries, the problem with a patient orientated survey is that it is subjective. It would be really interesting to see how different patients from different countries rate radiotherapy with Prof S for example where he has treated a wide variety of patients from around the globe to see this difference in rating is clinically observed in patient outcome or it is an attitude difference.

Overall the results for radiotherapy as a treatment option for Ledderhose are very positive and it was by far and away the best rated treatment option by Ledderhose patients in the survey, nothing else really came that close. However patients should know, as is well advertised, that radiotherapy is not a cure, it is not 100% going to work. In fact if you survey patients nearly 40% would rate it as less than 7 out of 10, some patients go from being in extreme pain to no pain at all (I would have rated myself a 9 out of 10 and now I am probably a 0 or 1) whilst others see no improvement or the condition can continue to progress or get worse. Of those that go get worse we cannot say whether this is because of radiotherapy or it was just the natural course of the condition and the radiotherapy was not successful. Yes the condition could get worse but it could get worse by itself, it probably will get worse if you have surgery or one of the many other treatment options.

Note that a smaller survey indicates that there have been no cases of cancer in post radiotherapy patients, results to be published soon.

Whether you like radiotherapy or not there is little doubt that it is a valid treatment option for Ledderhose and should probably be considered as the best treatment option for Ledderhose. Over time it will be interesting to see how the above more in depth analysis compares to the same set of results for other treatment options, though realistically only surgery had enough responses to justify being looked in to. Perhaps I should add that to my to do list as well.

I welcome feedback from patients and there are any other questions that anyone has about the results of the survey then please ask, I am happy to look more in depth into the data, there is just so much there that it really requires an initially question to be addressed. Thank you for those that asked this question and asked me to address it.

Sunday, 14 June 2015

When Ledderhose becomes life-threatening

You go on the internet today and search for Ledderhose or plantar fibroma and you will come across a lot of different websites, mine and the Dupuytren's Societies included but you will also come across a lot of websites that say this condition is not even painful. 

Dupuytren's and Ledderhose are not life-threatening conditions but they are quality of life-threatening. Sure this condition is never going to cause your heart to stop beating or your brain to have memory loss but does that mean that this condition is not life threatening? What about the mental side of things. 

This post is sparked by a recent conversation I had with a lovely lady from the UK. She contacted me through the blog e-mail a few weeks ago and I replied straight away saying that there is hope and there are still things to try. Over these weeks we have been trying to arrange a time to have a phone call, some patients prefer to chat that way and it is certainly easier than e-mails once you actually get on the phone. Anyway we finally got round to talking last night and one of the first things she said is thank you so much for taking my call and thank you so much for replying to my e-mail, you literally saved my life. 

We then talked for around 30 minutes, me sharing my knowledge and experience and talking through the different results from the patient survey and how they related to her experience. She went through what is happening to her now and how the condition is causing her to have suicidal moments, times when you can't see a way through. I am lucky I never got to that point myself but you know what I could certainly see where she was coming from and this can be hard for people who have not experienced anything like this to understand. 

Imagine that you are an active person, you enjoy being out and about and going for walks and suddenly there is a pain in your foot. Over the next weeks or months, perhaps even years the pain in your foot builds to the point you can't really walk. Doctors tell you that there isn't anything they can really do, the pain may get better by itself over time, no guarantee though. The only option freely available to you is surgery, it is a tumour after all but no the doctor (rightly so) says that it is not a great option and only recommends cutting it out as a final resort, you are thinking I can't walk when does that option really become available. You ask around and nobody else you know has even heard of the condition let alone gone through something like it, the condition is ultimately rare (at least in such as painful state) and you struggle to connect with others in your position, limited research is being done and all you can see ahead of you is years of pain and misery. You start taking pain killers, you try everything and although nothing really works things like codeine at least give you some sleep, a rest from the night twinges of pain that have you waking up with a jolt. Drugs like codeine are strong, you aren't supposed to be on them for long but coming off of them seems like a nightmare, you have to go through constant pain again and you find yourself thinking can I keep going. 

I am lucky to have had so many friends and family around me, willing me on and being there fore me night and day, we now have the amazing internet and facebook with groups and forums of other patients who are not only there to share their experiences but also to give you hope, support and commiserate with you and let you know you are not alone. These groups are so important that I am not even going to try and describe how important they are, I congratulate everyone that participates in these in any way shape or form. Patients on these groups might share with you their experience, like me of going from walking to stick to running and you think that could be me. The treatment you want costs thousands of pounds, at least it is not ten's of thousands. Everyone out there needs to realise that there is more than the actual impact on your body there is the mental impact as well. If your feet are bad it can really take your life away, you can't so so many things that you could do before, as I said above sometimes you can't even sleep without pain. 

Here is to hoping that one day we will have a cure and if not then hopefully we at least have patients being aware of and having access to all the different treatment options that might help them and with support so that they never feel the need to have suicidal thoughts. In fact both my wife and I are going to run the Brighton Half Marathon next year and we are going to run it for http://www.mind.org.uk/ 

Some things matter, things like approaching 200,000 page views, nearly 400 facebook likes, travelling to Groningen to present at the Symposium although nice do not matter, what matters is connecting with the patients that really need a helpful word from someone who has been there. I know the blog has helped hundreds, if not thousands of people but now I know it has actually saved someone's life, I cannot express how amazing this is and I know how hard it must have been for the patient to share that information with me..