Rare disease day...

Happy Rare Disease day everyone, not sure if that is the right way to announce it? 

Anyway today is rare disease day and that we should all be trying to raise awareness of any rare disease that we are aware of. I was interested yesterday as I am following the Rare Disease Day posts on facebook and a little boy was on there who has a disease called AT and I guess because people that are in the same building as me work on the protein associated with this (ATM) I forget that it is a rare disease. I am not going to go into the details of AT or ATM here as they are quite complicated and I would take me a while. 

Afraid that I don't have time today to post a thought provoking post like yesterday which by the way was a very popular post and has had many viewings and a lot of comments. Today was an ok day, my foot did hurt and it did really get me down this morning as we were discussing the time when we eventually have kids (a few years away yet) and I was already feeling bad about my foot as it was hurting the day before and was already niggling at me this morning (and proved to be quite bad today) and my partner said well we will have lots of little Me's running around and the first thing that popped into my head was if they are anything like me they will not be running around but rather hobbling and that really got to me. 

Anyway that is it for today but I hope to get a good science post in tomorrow. 

1000 page views on Plantar Fibromas

So now that I have hit 1000 page views I thought I would do a kind of top ten moments if you like on the blog so far. Not sure how close to ten I am going to get as it has come round pretty quick as I only started this in November and I think that it works out at about 20 views per post which is not that bad as I was only getting a few if any to start with. 

1) Understanding: Post referring to -  Understanding and Original post 

So I think that the number one thing about doing this blog has got to be the increased understanding that the people close to me have of what I am going through and actually just how much pain I can be in. I know that my partner who was fully aware of the problem was shocked at just how bad I had it and I found the blog a really good way to talk about it as well as in person. But not only her, my best man for the wedding and my mum were also reduced to tears upon hearing just how much trouble it was causing me. Everyone has been very supportive and some people (they know who they are) have been pushing for me to SIT, SIT, SIT and I think that all the sitting I have been doing has been helping. 

2) Meeting someone else with the disease: Post referring to My lovely lady lumps

I am not sure if this was really the blog or if it was the forum but in the last couple of weeks I have been in regular contact with someone who has the disease. It is fair to say that they have it much worse than I do but we have been through several of the same kinds of treatments and together we hope to be able to raise awareness of what it going on in our feet and hopefully band together some more of us so that we can get something done about it as the current solutions are just not acceptable and are certainly not well enough understood. She now has her own blog so for anyone interested see here.

3) Finding out about Rare Disease Day: Post referring to Rare Disease Day

In the process of trying to think of how awareness can be raised I came across an event that is called rare disease day. This is a get together that takes part pretty much worldwide with the ambition to increase the awareness of lots of different rare diseases. I had a look at and plantar fibromatosis or ledderhose however you like to look at it is considered a rare disease. This year it takes place on 29th February (leap day and so it only once every 4 years and so is rare). 

4) The number of views: 

Ok so this isn't a single post or a single moment but rather the coming together of everything. I have Google analytics linked to this blog so that I can see in more details what is going on. I get visits from different places which is nice but the biggest thing for me is that there are several different people, mainly across UK and USA that are spending around 20 minutes on the sure and are looking at lots of different posts and this means a huge amount. One of the main reasons for me doing this blog other than to vent was to let other people out there with this know that they are not alone and that there are lots of different treatments out there to try.  

5) How people are finding the blog: See this post - Top 10 blog and forum in Google

I was really pleased when I started doing Google searches using relevant search terms and the blog and the forum both came up. Also when I look at searches that people have used to find the blog and simple searches like "plantar fibroma 2012", "cortisone injections for reducing plantar fibroma" and "are there any insoles that help plantar fibromatosis" come up makes me realise that perhaps the right people are finding the blog.

6) Getting my foot spa and chair: See here - Foot Spaaaaah

So these things happened because of the blog and because people wanted to help. The foot spa was a Christmas present that was researched and purchased by someone who is fairly over protective of my foot (for my own good) and I really appreciate having it and would probably not have ended up with it without have the blog. The same goes for the stall that I currently use for washing up and the like, this is on loan from someone because they read the blog. 

7) My foot appointment for the orthotics: See here - A good appointment 

I was in quite a bad place before this appointment as the guy who I went to see about my foot, the so called "specialist" was a completely and utter waste of space and didn't know what he was talking about and just wouldn't listen to me. I went to this appointment not feeling that optimistic but the guy was great and he explained everything in a way that I understood but it didn't seem like he was talking down to me which I often feel having a scientific background. As it is I am in the Orthotics and I think things are going well with them. Hopefully for me they will at least resolve the issue until after the wedding and maybe far beyond.  

I think making it to seven is not a bad thing so now I will list a couple of frustrating things to get me ever closer to those 10 things.

Frustrating things: 

8) Lack of people following / joining the forum: 

I wish that I had a better conversation rate of views to members or followers. I understand that a lot of the page views will be by the same people especially as I have previously said many of the people that are coming here are coming back and are viewing multiple pages but even so it would be nice to see a but more obvious support.

9) Money - Well lack of it:Relevant post 

The book I mentioned that looked really interesting and maybe helpful in terms of understanding would be great to have but at over £100 it is such as crazy price hat there is no way I could ever afford it. Also there is the fact that people with money can get whatever treatments they want and pretty quick whilst the rest of us have to wait.

Well that is a rap as they say. Ok so I only made it to nine but I think that is quite good and perhaps I will do another post like this if I reach 10,000 views and then again at 100,000 and 1,000,000. Certainly would have raised awareness if I get to those sorts of numbers. 

Plantar Fibroma support forum

Ledderhose News

I was on facebook earlier today and I get the messages from the British Dupuytren's society. Their most recently linked article is Brighton Music Lover Thrilled with treatment. This is quite local to me so it grabbed my attention. It is about a man from Brighton with Dupuyten's who was given a Xiapex injection and it helped him hugely. Of course it is annoying that he had to pay from his own pocket but it got media coverage. Perhaps this local news outlet is a place to go to try to get a story in about Ledderhose for Rare Disease Day.

Anybody else find any news stories about Plantar Fibroma's or any of the related diseases? As I have not really had any success.

Though I don't seem to be able to access them there are several on Dupuytren's on the Times and I would really like to see the one by Jonathan Agnew as he is someone who I actually have heard of (cricket for those not in the know). I can actually find out much more about Dupuytren's than I can about Ledderhose which I have only found in one article and that was just because it was mentioned as being associated to Dupuytren's.

Just an update...

Right this is all done on my phone so any mistakes might not be my fault for once. I had some spare time on a train today and thought I could write a blog post.

The first thing that I wanted to cover was my Orthotics which I got on Monday and today is Thursday. I know they will not work for everyone but I'm beginning to have some hope that they will work for me. Over the past three days I have not worn them much and then today I was a little bit naughty as I used them for three hours in a row although I was seated for Quite a bit of this. The difference when I put the trainers on is subtle I can feel that there is extra support and like to think that over the course of a few hours I can tell the difference. I tried standing for a little bit today, just standing still as this is what was one of my most painful things and at the moment it still is and I could feel the pressure building. Not wanting to push the limits of them too much I took them off and switched to my normal running trainers before heading for the train. Apart from the insole containing trainers being much warmer and drying which was to be expected there was no difference, ok so actually there was.

Anyone who had read this blog will know that I not only have problems with pain in the foot but also that I twist my foot right over to protect from the pain and have a bad ankle on the other foot.

1) The ankle - this was ok, despite going up and down stairs it felt good, hopefully this will continue to be the case and that'll be one problem dealt with by the inserts.

2) The twisting - wow, after wearing the insoles I sure notice the difference that they make. After taking my feet and placing them in the running trainers everything felt unnatural, it seemed normal again after a few minutes but I guess this is why I have to break them in and hopefully they can adjust my walking completely but perhaps for this to happen I would have to get some for my slippers and never walk barefoot.

3) the plantar fibroma - It is hard to tell from such little use. When wearing the insoles the lump was again not too bad and when switching back to the running trainers I started to get the odd twinge. I'm not saying that insoles are the right way for everyone, they might not even be right for me but as a minimum I am now hopeful that they will at least help delay the disease getting to the point where it runs walking life and the next step is to try then in shoes to see if I have to get some new ones fire the wedding.

I have also been thinking about rare disease day as it is something that interests me greatly. I have mentioned it to my partner who was encouraging and as the special day coincides with her last day at work we're thinking of serving cake with a helping of Ledderhose information. I have also mentioned it to my best man who said we should at least do something, do with those encouraging comments behind me I'm thinking of implementing something.

Although the above has the potential to raise money if we sold the cakes who is there to give the money to? In a post yesterday I talked about the rare diseases and I also did a search on the official site of all UK charities to see what was out there. Looking for Ledderhose or plantar fibroma(tosis) gives no results so if I did raise any money then there would be no relevant group to give it to. The chance to start a charity is there but that requires start up money and the time to manage it of which I have neither. But lets assume that there was a charity, who would that charity give the money to? With no research really going on into this you can't even give the money to them so you would only be able to use it to give support to those who have it and can't afford what they need to get round. Although helping these people would be great it would not get us any closer to a cure which is what some people are waiting for. I have to say that I think I am lucky to be living in the UK, as although I have find that the NHS is slow getting things done I do get them done and I don't have to pay. I have had physio for two conditions, the steroid injection, the Orthotics and an MRI. That's not too bad considering I only went to my GP with this 25 months ago.

Fingers crossed that we can raise awareness, even raise funds and who knows help people get on the path to help and wanting to find a cure. After all I hope to raise awareness in a scientific research building.

I'm thinking of doing a few posts covering all the different treatment options in as much detail add I can and maybe I'll find something new and useful in the process.

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 http://www.raredisease.org.uk/ 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 fiancée so have to make sure to make the most of it by being at work all day.