How common is Ledderhose disease?

So just how common is Ledderhose Disease? 

For the most part the prevalence of plantar fibromas is unknown and so it is hard to say that it is a rare disease but this is often how it is classified. 

Here I am going to try to find as many different resources as I can that mention actually how common lumpy feet are. To be honest I do not have a clue what I am going to find at this point (having not yet done the searches) but I know that before I had Ledderhose disease I had never heard of it or anything like it and indeed everyone who I have spoken to about it has not heard of it or anything like it so how common can it be? 

I also go to the foot specialist in my local city and it was clear that he has had many cases of this and has formed opinions on the different kinds of treatments that are available and this makes me suspect that he has seen many cases. I then have to try to remember that he is a foot specialist for a large area that is probably several million people and has been for 20 plus years and so even if the rate is as low as 1 in 100,000 then that still means that he is going to see quite a few patients in that time with this disease.

1) 1.2 in 100,000 - So the estimate that I am going to start with is from the paper that I reviewed the other day [1]. In this paper they are looking through a lot of data in Holland and they find that the rate of occurrence there is around 1 in 100,000 [1]. This is in my opinion a very low frequency and would certainly mean that Ledderhose is a rare disease and in fact much rarer than I would expect. This is because if you use the figure above and apply the same rate to the UK which has roughly 62 million people you end up with a figure in the range of only 620 people with the disease and from what I have heard at the doctors this figure seems far too low. This figure comes from studying a small subset of the world’s population and perhaps the same study in another country would give 1 in 10,000 and suddenly you are looking at 6200 people in the UK with Ledderhose disease.

This pie chart visualises the proportion of people that this source indicates have Ledderhose disease. 1 in 100,000

2) 25% of middle aged and elderly people: I have frequently come across the site for PDlabs when searching for Ledderhose disease and plantar fibromas and on their site they say that this nasty thing maybe as common as 1 in 4 people in middle aged and elderly people. I am sorry but I find this figure is way too high, if it was this common then surely there would be many more people limping round the streets? In a way I have six grandparents and none of them have this condition, I also have many family members who are over 40 years old (I am not sure what counts as middle aged) certainly more than 10 people and none of them have had or heard of this disease. Where did they get this information from? Well it is this site here [3] "Lederhose disease is relatively common, and plantar contracture develops in 25% of middle-aged or elderly individuals" [3].

The above quote was given with NO references at all to back it up and they have spelt Ledderhose wrong so I am not sure how much faith can put in that being correct but many places seem to use this site for their information and there are lots of sites out there that quote this site and so all say this figure which made data collection for this post quite hard. Another thing I would say is that all they actually say is that LD is common but that plantar contracture occurs in 25% of people but is all of that caused by LD????

Another pie chart, this time to show the frequency that the above source suggests. Just look at the difference between the two. 1 in 4 or 1 in 100,000.....

3) "Rare" - To try to balance out the number of sites that base their information on the above I thought I would also post another paper that suggests that this disease is rare. This is a common theme, all I seem to be able to find is either it is rare or it is common and how are we the patients supposed to know what is going on when there are such conflicting statements out there. 

This is annoyingly as much information as I am able to find out with regards to how common this disease is. So on the one hand we have 1 in 4 and on the other 1 in 100,000. How common is it? In all likelihood somewhere in the middle. 

References:

[1] Eelco de Bree, Frans A.N Zoetmulder, Ronald B Keus, Hans L Peterse, Frits van Coevorden, Incidence and treatment of recurrent plantar fibromatosis by surgery and postoperative radiotherapy, The American Journal of Surgery, Volume 187, Issue 1, January 2004, Pages 33-38, ISSN 0002-9610, 10.1016/j.amjsurg.2002.11.002. (http://www.sciencedirect.com/science/article/pii/S000296100300432X)

[2] PDlabs - http://pdlabs.net/plantar_fibromatosis/whatisplantarfibromatosis.html

[3] Medscape http://emedicine.medscape.com/article/1061903-overview#showall

[4] Dominique Fausto de Souza, MD, et al, 2010, Ledderhose Disease: An Unusual Presentation,  J Clin Aesthet Dermatol. 2010;3(9):45–47. http://www.jcadonline.com/ledderhose-disease-an-unusual-presentation/

Updated 31/05/2012 (Formatting and Typo changes on 03/04/2014)