Looking back and working forwards

After the post I did yesterday and the I thought I would have a little look back at some of the posts I did on this day in 2012. Back in the day I was really busy as there was lots going on with me to post about and I was constantly finding out new things about the condition.

One of the questions that I asked 4 years ago it how common is Ledderhose disease. To be honest I am not sure that we are any closer to knowing the answer. It is considered a rare disease, hence it being part of rare disease day. 

In terms of the UK I have heard that around 2 million people suffer from Dupuytren's disease. Based on the survey results from last year around 25% of Dupuytren's patients have Ledderhose and about 80% of Ledderhose patients have Dupuytren's (from memory of those results!!). 

This would suggest that there are 500,000 Ledderhose patients in the UK that also have Dupuytren's and there are around 600,000 Ledderhose patients in total. I guess that is around 1% of the UK population which seems rather high to me. I know many more people than that  and work with a couple of hundred and as far as I am aware they do not have Ledderhose. 

I can't even remember a ballpark figure for the next bit which is actually how many of these patients have pain and how many have been diagnosed? From my experience I would probably guess around 25% of patient (this is a guess) get diagnosed. This would mean around 150,000 patients in the UK that have been diagnosed with Ledderhose. So whilst it is rare I don't think the above numbers would mean it actually gets classified as rare.

I have tried doing further research into this and can't find any new research that would give an indication of the number of people with this. Happy to hear from anyone who can tell me otherwise. 

The so called specialist appointment!

So today was the day of the specialists appointment with the NHS to see what they thought. Well it was quite clear that this lump was getting bigger and they seemed to understand that the pain was getting worse and that they only thing that they could offer me was surgery and surgery was all that they could offer.

Needless to say I made it quite clear that for me surgery on my plantar fibroma is not an option, at least not untl I have exhausted many more options. I then explained to him what the options were, they are radiotherapy and collagenase injections. He said that both he and the main man were unaware of anyone doing it in the area and that it was still considered experimental. In fact I can say for sure that both my wife and I knew more about this than they did and they are supposed to be the specialists. Then again what does that mean? I was also in contact again with Henry Orton from the British Dupuytren's society where he handed out some of the leaflets I have available on the resources page. Here is a little quote from the e-mail that he sent me:

"Interestingly of about 100 chiropodists or podiatrists in the audience, when I asked, only about half a dozen had heard of or encountered Ledderhose (Plantar Fibromatosis)..."


So as you can see from the above just because someone knows feet they do not know this rare and frustrating disease. What the appointment today showed me was that I am now my own specialist and I am having to make decisions that are going to cost money and influence my health, potentially for the rest of my life based on the research that I have done, what the British Dupuytren's society share with me and what I hear about on the awesome forum - Dupuytren-Online. I am looking into radiotherapy both here in the Uk and in Germany so that I can compare total cost for both, going on what I have been told Germany is £500 plus about £200 for flights and £300 for somewhere to stay and probably another £100 on food and other expenses. The UK, I have been told, is £2000, which depending on location will either include travels costs to get there each day which will likely cost in excess of £50 or again somewhere to stay for the week and food if it is too far away to stay at home. You do the maths!

So I am left hunting radiotherapy, I am left still in pain (though I do have co-codamol now which knocks me out so is only good for home use but seems to help a bit with the pain), I am left trying to raise money and awareness so that we can tackle this disease, so that other people in the future have better guidance and treatment with this disease.

Actually I would like to correct the above as there are so many people, most of all my wife, who are supporting me so much.... So we are left hunting radiotherapy, we are left coping with the pain, we are left trying to raise money and awareness so that we can tackle this disease, so that other people in the future have better guidance and treatment with this disease.

To use the phrase I heard I think from Rare disease day, or it was at least something similar, "together we stand strong".