Wednesday, 2 March 2016

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.