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.

Sunday, 24 May 2015

Conference over, time to go home

Fountain in the local park where I went for my runs
So the conference is over and it is time to go home and say goodbye to Holland. I have had a fantastic time in Groningen and the conference certainly lived up to my lofty expectations. I have spent so much time in the last few days hearing about Dupuytren's and Ledderhose from the best experts and doctors in the world that I am on information overload, hopefully that is a good thing and hopefully these doctors will stay in touch and feel they are able to use the patient community to enhance their research. 

My talk was apparently received very well and I have had doctors and other attendees telling me I did a good job and hopefully when it comes on YouTube everyone else will agree. I feel like I did myself and the patients proud although I forgot to mention that 92.5% of Ledderhose patients that responded that were over 60 had Dupuytren's, not overly important but that is a shockingly high percentage. 

The final part of the conference was a discussion on collaboration, people working together to get the best funding that they can for this kind of research. It was great to see people working together like that. There seemed to be some great ideas of what is needed to really progress Dupuytren's research and further the work that is going on. 

I certainly feel that with the minds that are looking into this and the way they all want to work together for the benefit of patients there is hope for patients that we may one day have a cure for this. Sure it may not be in the next 5 or 10 years but I am hoping that if nothing else it would be available before my daughter would develop this condition (hopefully she won't get it). 

Saturday, 23 May 2015

International Dupuytren's Symposium - Day 2 - afternoon

Radiotherapy:

Prof S:

Looking at the whole body, look for feet, shoulder, privates, and hands not each thing as an individual item.

Radiotherapy can prevent progression in non-cancerous tumours and there are many different fibroma conditions. The radiotherapy impacts both proliferation and inflammation and this is how it can work on DD / LD. So radiotherapy can impact the cells as they are proliferating so quickly that the radiotherapy causes DNA damage that causes them to go into an apoptotic state rather than continuing to replicate.

TGF-B is very sensitive to radiotherapy and is known to be involved in the development of the cells from stem cells to postmitotic state PMF. This has been shown in science journals and cells basically are forced to skip the step in which they are proliferating and in which they cause DD.

Patients that are progressing, so therefore have active DD / LD are those that can be used to determine if patients should be treated. To be clear radiotherapy cannot be used in the latter stage of the disease, but can it be used post-surgery to prevent it entering the latter stages again. For the above to work we need to know what is progression so we can determine what is the right course of action. Increasing symptoms, cords, nodules itching etc are good signs.

If radiotherapy is used at an early stage it can delay or even stop progression. Published data shows that there are some responses to this in the different stages of DD and the later stages of DD should not be treated with radiotherapy but in the initial stages there is a good response to radiotherapy, especially in stage 1.

There have been several different techniques as to what is the best, and comparitive studies show they work but the favourite is 3x5gy done twice over 2 different weeks separated. Random between 2 schedules and controls

3 groups - 0 gy, 21gy (7 days in a row) or the now standard 30gy treatment.

No difference between electons on ortho-volt. There were no difference between the groups in terms of other factors.

20% of patients had a remission
53% were stable  in all RT patients.
Only 8% of patients in the 30gy group went on to have surgery..

Surgery is possible after RT with no extra complications. 12 week break is standard. Radiotherapy with lower doses does work if patients are concerned but it doesn’t work as well.

Radiotherapy used post op in patients with DD in PIP joint.

Ledderhose results skipped!!!! This was due to time constraints so I understand even if I am annoyed.

In cases of Ledderhose 80% of patients see reduce of symptoms and can be done post-operative and can be considered after multiple surgeries. There are several patients that have relapsed and in a different region they are happy to repeat, if there is a relapse in the same area then there can be a third week but going on beyond that is not great.

One key thing is that the dose is above 2gy, so 3gy x 5 or 5gy x 3 can work.

This was a very interesting talk and I knew most of it but it was great to hear the discussion between the surgeons and Prof S, his answers were mostly good.

Next was my talk, gulp.

Overall I think it went well and the basic results that I commented on were:

There is a very high number of female patients, in fact more so than in women and this could be real given the degree of deviation from the norm, however it could be a limitation of the survey, should take into account for the book how many patients have been self-diagnosed. In my experience there is a higher number of women, one doctor commented that many women who think they have nodules have hammertoe and many men who do not think they have Ledderhose in fact do have it. In hindsight I would argue that most of the patient participating in this survey are knowledgeable and most have Dupuytren’s so have probably been checked for Ledderhose, or at least should have been, so if the numbers are biased then it is because doctors are not checking up as they should.

The usual conditions are related.

Radiotherapy is the best treatment option as far as patients are concerned for Ledderhose. No other treatment option even comes close and no doctor even questioned this result. I got in my point about the lack of Ledderhose information and the lack of talks that even consider Ledderhose over the last 2 days...

After this point I did miss the next 2 posts in a post talk buzz but both Dr Bojaj and Anna both said well done on the way back to my seat which was nice.

Have to admit that despite nothing really being on the line for me my heart was pounding and I was a little nervous (though not much really) and I think this is because I wanted to do everyone proud, everyone who has taken part in the survey deserves me to put their point of view across. If anyone would like a copy of my powerpoint presentation then just ask, happy to provide. Certainly if you have Ledderhose then the graph on the treatment options is worth taking to any doctor you see that doesn’t approve of radiotherapy.

The next talk I have notes on is the one on Peyronie’s. To be fair this is probably a talk you can avoid watching, unless you like seeing surgery pictures and you can guess what they look like. Also mentioned the use of Collagenase on the treatment of this condition.

I am not sure what the last mini session is on but think it is mostly going to be 2 interactive sessions on research, first science research and then clinical research.

I will post this as an update now as I am unsure whether I will make many notes on the last session as I am not sure how relevant it will be to me, but I will do my best to give any input that I can and provide you with any output that I can.