Wednesday, 18 January 2012

Raising Awareness of Plantar Fibromatosis

Raising Awareness of Plantar Fibromas / Ledderhose Disease:

If someone comes up to you and says they have something like asthma you go ok fair enough. Someone comes up to you and say they have a Plantar Fibroma (or Ledderhose disease) you go "eh!". Almost everyone who I have had to explain what I have to has not had a clue what it is, I also think that some of the so called specialists that I have seen have not been up to scratch with what I and many others have.

The problem with Ledderhose is that although it is debilitating to those that suffer it is not life threatening and how many do you know that have it? In all likelihood you are looking at this page because you are the only person you know who has it and are looking for others or you've come to the wrong place but I don't know anyone other than myself that suffers with this. So how do you convince people that it is something that needs to be looked into? Why should people research this little known and rare disease? I guess the answer is that they should not, I mean with disease like cancer out there why bother wasting your time on something like this? Well I think that the pain that those of us that have it have to go through means that it deserves some attention and in some cases it leads to depression, it leads to people being unable to work and with the related diseases that could also benefit from the research surely it is worth a shot? I also think that this is a disease which, if studied correctly, could be cured in a relatively short space of time whilst something like cancer I don't think we will develop a way to properly stop it and being in the cancer research field I should know.

So I think that the only way  anything can happen is to raise awareness but with our numbers so little and the numbers of people that have the internet and are connected and suffer pain enough to want to do something about it being even less what can we do? The answer is that I don't know and I wish I did, it is frustrating for people like me and those on the forum - Plantar Fibroma Support Forum that we have this and we want to do something about it but where do we start?

I think I have made and start and that brings a smile to my face. How many of my family, friends and work  colleagues knew 3 years ago what a Plantar Fibroma was? None, whilst now they all have at least heard of it and some have tried to get a better understanding of it and certainly an understanding of the different types of treatment that have been tried on me so that if someone else was to come up to them and ask they would know and this might provide relief to them. I also hope that the above mentioned forum, if it gets enough members, can have an impact as it can be a place where everyone who suffers with this can get together and we can talk, discuss and arrange to do things that help us and everyone who has the condition.

Earlier today I came across this Rare Disease Day 2012 and I am wondering if it is something for me.

It seems that this is a day that takes place pretty much across the entire globe to raise awareness of rare diseases. I wanted to check and see if Ledderhose / Plantar Fibromas were on this list so I went to which directed me to Orphanet which came up with the following entry Plantar Fibromatosis Although there is nothing there at the moment this seems to confirm to me that this is on the rare disease list and took me to the US version which also had this on the list NIH - Plantar Fibromatosis (though this does state that - ORDR lists rare diseases for information purposes only and does not guarantee that a condition is rare.) 

One this that came from this is that it list research projects on this disease, the result for Ledderhose is equal to zero at the moment so I think it is fair to say that something should be done and that I should do something for Rare Disease day even if it is just to put up a poster.

On other news my foot has been hurting again today and the pain did really ramp up as the day went on. Interestingly and hopefully promisingly I am sure that at about 4pm when I stuck on the trainers with the Orthotics in my foot did hurt a bit less, whether this is actually due to the Orthotics or whether this is just a fluke I do not know but fingers crossed that they are going to help me. I am finding the adjustment hard, not wearing running trainers is odd as normal trainers are not as springy but are much warmer and dryer given the current weather conditions in the UK and as my lump hurts more when it is cold this is hopefully a good thing.

I am also looking forward to celebrating my Birthday on Friday, it will be my only birthday with a fiancĂ©e so have to make sure to make the most of it by being at work all day.