Collagenase for Ledderhose?

I have previously covered the topic of Collagenase injections by looking at various aspects of it including its use in cells, interviewing a Doctor that uses it for Dupuytren's and covering the material presented at the Dupuytren's symposium. Because it has not been approved for Ledderhose I don't have a specific page in detail on the treatments page. 

There are a couple of different enzymes that have been trialled to break down these lumps and it looks like Endo are hoping that their product can be an option for Ledderhose. 

Endo Presents New Investigational Collagenase Clostridium Histolyticum Data at the American Podiatric Medical Association Annual Scientific Meeting

So what does the article actually say? 

That there have been some encouraging clinical trials done on using CCH in the treatment of Ledderhose disease. Basically so far their studies are indicating that the injections are well tolerated by the majority of patients and that most are seeing an improvement in the condition. Overall it sounds promising but obviously they are still looking into it and I know there have been mixed experiences with using it to treat Dupuytren's. 

Would be good to have another treatment for Ledderhose, of course assuming that is a successful and viable soltiion. 

My top moments to get to 100,000 page views

Ok so the crazy moment has arrived where my blog had now had 100,000 page-views!!!!

When I started the blog I never imagined I would get 10,000 page-views let alone to 100,000 and sometimes 5000+ in 1 month. Although I have been the one asking a lot of the questions and doing the research I have to thank everyone that has done an interview as they are really popular and helpful posts that really make the blog as successful as it is. 

When I got to 1000 and 10,000 page views I did a recap on some of my favourite posts and things since I started and I thought it would be nice to do that all again, especially as so much has changed. Not surprisingly none of the science posts or treatment posts will make my list as although they are useful they were not as enjoyable as many other posts. 

1) The original post that I have been updating. This is by far and away the most viewed post on the blog and probably is one the most useful posts. I started this post when I was very low and my foot was really starting to progress and get to me more and more. It began to show to others how I was feeling and how bad the foot was, it ultimately it was started the blog and got the ball rolling. 

Everyone who ran / walked to help raise money for me to get radiotherapy.

2) The run to raise money - Whilst the post was not that significant and may not be that useful to visitors the run itself showed me how much various people cared for me, how much of their time efforts and money they were willing to donate to help me and to get my foot better. Thank you again to everyone who ran and donated as this was the start of road to radiotherapy.

3) I got married - It seems like a long time ago but back in February 2012 I got married to my wonderful wife. She was my rock when this condition was awful and I owe a lot to her. There is no specific post for the wedding but instead I'll link to the interview she did for the blog.

Me and the machine about to zapp me.

4) Starting Radiotherapy with Dr Shaffer - Back in May 2012 I started radiotherapy with Dr Shaffer. This treatment has so far led me to be able to live a normal life, no walking stick and I can run and play badminton. I remember the day my wife and I went for this first day, it filled me with hope and was the first time I had had anyone draw on my feet.

5) My interview with Dr Shaffer - I am not referring to the consultation (which was very good) but to the interview I did for this blog. It was the start of getting specialists to post on here, a great addition and it brings a genuine medical perspective to the treatments. I am biased because Dr Shaffer treated me but he did give a very detailed review of things and I am still in contact with him now.

6) Helping other and their e-mails - By far the best thing to have come out of the blog is that I have managed to help others. It is a fantastic feeling when someone tells me that my blog has helped them, whether it just be that they no longer feel alone or whether it is like the linked e-mail where the lady found Radiotherapy and Dr Shaffer. I have continued to stay in touch with the very nice patient who contacted me and she, like me, has seen a great improvement after radiotherapy.

7) Ditching the stick - Pretty much all of 2012 was spent hobbling around with a walking stick and in a great amount of pain. Towards the end of 2012, after my radiotherapy, I gradually started to walk without the stick and come the end of the year I decided to walk with the stick. It got put away and I no longer carried it with, since then I have not need it and have progressed on to...

8) Playing badminton and running again - When I originally started the blog I did a post along the lines of the things that I miss, when I came back to it later the only thing I really missed was badminton and my freedom to be able to get off the bus a stop early or walk from a car park to a restaurant etc. I am now back fully playing badminton and running (up to) 10km. Anyone who has this condition will know what it feels like to live with it day in day out and to get away from that and being able to run was the ultimate way to celebrate radiotherapy working.

9) Amelia -Just as I was starting to get over this condition my wife became pregnant, this was fantastic news and I remember how delighted I was to see the positive test. However from there the pregnancy was awful, constant sickness and trips to the hospital for dehydration. Still at the end of it our beautiful daughter arrived. Amelia is fantastic and her smile never fails to light up a room. I can wait to see her develop and I am loving seeing all the changes that take place as her personality takes shape.

Some things still annoy like when doctors say they will do an interview and never send back their answers or they just ignore the first e-mail, I am not asking a lot of them and not only could the interview help patients but it also helps patients find them.

I guess the next goal is to get to 1,000,000 page views and more importantly hopefully help at least 9 times as many people in the next 900,000 page views as we have helped in the first 100,000 page views. 

Thank you.

Update on everything

The Update

This is just one of my updates to say that I am still around and working on things in the background. Again in the last few weeks I have had patients contacting me and it is nice that I am now able to put them in touch with patients that are fairly local to them and in some cases have had treatment with the same doctors that they are considering seeing. This is really good as it means not only can I try and give out the information that I have but I am also able to spread this and let them get knowledge from someone else.

I am hoping to turn this into a network of sorts. It would be great if I could have a list of contacts, just name, e-mail, home city / country and treatments had / specialists seen. Then when someone contacts me I can point them in the direction of this person, or to the network page where they can find someone with a similar experience and ask me for their e-mail (I would not want to publish these on the internet.

Interviews on the way from both professionals and patients although they have been "looking" at the questions for several months so I am starting to doubt whether they are going to come or not, at least I have tried. It would be great to get some more information on Verapamil and Cryo so hopefully I get some responses. I am also working with another patient and a professional on 2 separate posts which I hope to find the time to do soon.

How you can help:

As always don't forget that there already is a network or sorts, the Facebook page is building likes and so there are a growing number of patients that will see your post should you share your experience.

Please consider hitting the plus 1 button on the right if you found the site useful, this will hopefully help others find the page and will help to moves things forward.

Volunteer your story. It is always great to hear from patients, if you have had treatment and think that sharing it with others might be helpful then please contact me and I will post it, or send you questions to do an interview as I have with many others. Equally it would be great if people would let me know if they are willing to be contacted by other patients should I think that their experience and knowledge might be useful to them.

 My foot?

I have been really busy in the last few weeks. As I have mentioned previously I have started running, my foot has been coping well with that and I have started to enjoy it. As part of a charity run for work I managed to run 10km, a great achievement for me. I am also back playing badminton and working towards becoming a fully qualified coach. My movement around the court is still flatter than it was before my foot got bad but hopefully I can lose weight and get back to where I was. My foot has been coping great, in fact I would say that the post run and post badminton soreness is decreasing so the only thing that still gets to me is standing for long times.

The baby
 
Amelia is growing nicely and continues to develop every day. She is well trained and sleeps through the night, as she has done since she was 8 weeks old. She is a cheeky monkey and thinks she can get out of any situation by smiling sweetly and to be fair to her that works on most people excluding her Mum. She has an infectious laugh and it is wonderful to see her starting to develop her own personality and beginning to try and become mobile.

And Finally...

Thank you everyone for your continued support, the blog went over 90,000 page views recently and it should go past 100,000 in the next 3 months, it still seems crazy to me that so many people want to view my blog and find it helpful. I will certainly have to do a review post once I reach this milestone, after all I did suggest I would do it back when I got my first 1000 page views.

Making Friends

On the face of things the blog has died down a bit, I rarely post more than once or twice a month and as a result page views are starting to tail off a little bit, not that I care as it seems the important people are still getting onto this blog and are still contacting me for information.

In the last few months the number of people that have contacted me on facebook or through commenting on the blog has increased and the number of people that are in regular e-mail contact with me has increased. There are now several people through the blog with whom I am in regular contact and have been for a year, kind of like plantar fibroma pen pals. In some cases meeting up seems unlikely but in other cases it looks like it is going to happen. 

One of these people lives near me, we are hoping to arrange to meet up next week, we have already spoken on the phone and he is already seeing Dr Shaffer because of the information he has read on the blog and the internet as a whole. 

Another patient I am speaking to is coming over to the UK next month to see Dr Shaffer (they are from the US) and in the process they have decided to spend the night in the Brighton area before returning on their travels so that they can meet Katie, Amelia and I for dinner. It was so nice to hear that she wanted to meet us and made special arrangements so that it could happen, this is someone that I am hoping to interview and whilst I don't want the meeting to be all about our feet (how odd would that sound to a casual observer) but I can at least hand over a list of questions in person. She has done a lot of research and seen many specialists so it will be great to meet her.

Another lady in the UK is hoping to meet us at some point but it is just finding the time, we live just too far away to make it a day trip and just need us both to be in the right place at the right time so that we can meet up, again this is someone I have been in contact with for quite some time. 

In the last week or so there has been one person in particular who contacted me who I have tried to help a lot, this disease can really isolate you as you feel stuck, you can't move around too much as you don't want to aggravate it and if you are living alone without family close by it will be hard to get anyone to listen. She has decided to start up a blog, once she gets going I will post a link on here so we can see another patients experience and what she finds out. The network of people that I am starting to know now means I have been able to put her in contact with a patient that lives fairly close by and has done a lot of research so they can compare notes and know there are others out there.

So although the surface of the blog itself may not be teeming with life just under the surface of the water there is a lot of activity which is more important than what you can see from above. 

Lots to do and little to update

So at the moment I am up to lots but it results it very little to update with on here. Firstly I am in contact with several patients who I am almost chatting with now rather than just offering advice which is really nice.

As of last Sunday I was made a trustee of the British Dupuytren's Society so I am busy looking up lots of things for them and trying to see what I can do to help, from seeing what we can get for free to ways of raising money, any advice is welcome. You can also follow them on twitter by clicking the follow @Dupuytrens twitter button the right. Make sure to check out the site by clicking the BDS logo on the right and feel free to donate the money will be used to help Dupuytren's and Ledderhose patients. 

One of the main things that I am going at the moment is to look into improving the information that they, I guess it should we, have available on Ledderhose disease and any other areas where I think I can add to it. I am starting with the Ledderhose treatment section and seeing what I can do. Hopefully it will be a busy year with lots of fund raising and lots of awareness generating and patient helping. 

I have also contacted the specialists that I saw on the NHS as they seemed unaware of radiotherapy as a treatment option, I have now drawn their attention to it and asked them to get in touch if they are interested. Would be great if at least they actually read the letter and ideally end up directing patients to the British Dupuytren's Society for further advice if they feel they cannot offer them the best treatment, after all it was only in March that I was being told that all I could do was wait for it to get bad enough that I need surgery. 

I have also written to a local journalist to see if they would like to make a story of this as they covered a Dupuytren's patient who had Xiapex, why not cover a Ledderhose patient that has had radiotherapy. Fingers crossed and then perhaps this can help people learn about the condition. 

I am also thinking about my 1 year post, after all it is only 11 days away, lots of pictures and lots of writing. I am also hoping to have by that day a new edition of the 'Ebook' that I put on this blog, hopefully fully up to date with all the information that I now have about radiotherapy. 

So all of that along with looking after my wife and preparing for holiday in a couple of weeks and Christmas next month I am quite busy... 

Interview with the Wife of a Ledderhose patient

Right now then for this post I interviewed my wife to see what it was like living with a Ledderhose patient, though when I asked her to do this rather then say Ledderhose patient she said cripple so I guess this goes to show how bad it can be for me. She has to put up with a lot including me babbling on about this blog and my foot all the time when I should be dedicating more time to her. Even so she still agreed to do this.

1) How long have you been with the Ledderhose patient?
 

I have been with my patient since 25th September 2010 but I've been the wife of a patient since 13th February 2012. He already had the condition at this time but it was not too bad. 

2) Had you heard of Ledderhose / Dupuytren's before your husband mentioned it to you?

No, I didn't know anything at all about the condition and I'm sure most people don't. When he told me about his Ledderhose it was a while before I realised the impact and actually looked it up in detail. I found about
Dupuytren's later on discovering that they were related (which my husband probably told me).

3) How long has his Ledderhose caused you to have to make changes to your life?

I can't really answer this one accurately as I don't remember when it really started impacting us, my husband probably remembers more. I remember as we were planning our wedding, needing to think about whether he should sit down during the ceremony, how we'd take the photos, whether he could do the dance, what shoes he could wear. When we first met he needed running trainers for support and so there was a point when we thought maybe he'd have to wear these on the day (as it was he got his new orthotics in January and they seemed ok).

I remember playing badminton with him and being aware that he shouldn't do it so much and training to get him to sit down. But as I said, I can't pin point the exact time it changed but at some point
since February 2011 and February 2012.

4) What sort of things do you have to do / put up with?

I don't have to do anything but of course I want to, to try and minimise the pain he's in. If I can limit the amount of time he's on his feet then great, so I try and do all the manual housework before he can. We now park much closer to our venues; no matter whether we have to pay (I used to always find free parking further away). I have to consider whether he's up to going around the supermarket that evening and whether I need to drop him at the door. Sometimes it's so bad I have to go and get the car to pick him up even if it's not that far away. Since starting my new job I'm not able to pick him up and drop him off so much but I always try and consider whether it's an option to collect him.

I no longer play badminton, as he can't and it's not fair to rub that in his face. Even going running I feel guilty because I know he can't do it. I feel that I have to be strong and support him because otherwise it'll just make it worse for him. I try and make him feel positive and look to the good things in life. We have got a tall stool for him to sit on when doing a few tasks, a stick for him and a portable seat. I have to be stern with him and stop him doing things he enjoys so that he'll sit down as I know that it's better in the long run for him.

Recently I tried to turn my efforts to things positively and help raise money for his treatment and for the British Dupuytren's society. By doing this I feel like I'm achieving something positive and focusing my efforts somewhere where they are needed. Whilst he can't join in too we have to remind him that it's because of him that we're all there and he's running with us in Spirit. Next run I'll have a picture of him so he is running too!!

At the moment life revolves around his foot, it starts and ends every day and for him controls a lot in the middle. Whilst I've got spare time I'm at home updating the facebook group, looking up runs, training and trying to think of ways to raise money. Even when thinking of the future and long term where we want to settle, I'm conscious that we need to be somewhere accessible for him, somewhere that's not too far to walk or at least has a bus.

I don't feel that I do enough because ultimately I can never take the pain away or make him better. The best I can do is support him, encourage him to write to others and find out information, be positive and do everything I can do to make it better. That's not enough and never will be but I hope that it at least helps.

Summary:

It helps a lot to have someone so awesome by your side.

Things that help me with Ledderhose

A sense of inadequacy today!

 For one thing I was chatting with my wife about what she had been doing whilst at was at work and she was between driving lessons and she said she had been ironing the chair sashes from the wedding that we had just sold and was quite frustrated that she had only got about half of them done and was tired. I said that I was more than happy to do some this evening but she said there was no way she would let me stand and do the ironing and even though I have my stall I am still not really in a great position to be able to do that and I had to concede her point (I will come back to the stall in a bit).

The second thing that then happened was everyone at work was talking about this fun run that they are going to do and another person had e-mailed about the one they were doing and I find this so annoying as I would love to be able to run, to walk even a couple of miles and to be able to raise lots of money for charity but let’s face it again that there is no way that I can do that either.  Still I need to pick my battles and there is no point in me getting down about not being able to do the ironing (it hardly ever needs doing anyway) and not being able to go for a run as that is something that just shouldn’t concern me and in fact I am happy the others in the lab are going to do it and are hopefully going to raise some money for some good causes.  Wouldn’t it be nice if one of those causes could be something related to some research for Ledderhose disease?

There are many thing and now many posts that I have made about the different things that I use to help me get through the day so I thought it would be good to stick them all somewhere where they are together so that it is easier for people to find:

Stall: So I have a stall in the kitchen that when my foot is particularly bad I use for the washing and drying up. 

Foot Spa: See my comments here but basically it is a nice warm massage for my feet. 

Snuggle Toes: See here for the warm slippers that help me to get to sleep. 

Walking Stick: New addition that I am trying to take the weight off of my feet. 

Orthotics: Take the weight around the lump and offer much better support than anything else. See here. 

Wonderful Wife and supportive family: There is nothing like having people that will put up with you moaning about it and give helpful suggestions and great advice. Thanks everyone 

  

Foot Spaaaah: Helped my Ledderhose

Foot Spa:

At Christmas I was one lucky man as I was given a foot spa to give my foot little feet a bit of a break from the plantar fibroma pain and allow them to relax and sit back in bubbles, heat and vibrations. I think it is this one or one like it and I am shocked at the negative reviews that I have seen so far MySpa Foot Spa.

Basically it is a little tub that can hold your feet, it has little nodules on the bottom and you press the button on the top to get it started, one press is massage only which I have to say I don't find does much but my partner loves it, whilst a second press will give you bubbles and some heat to help keep the water warm. I tend to start by filling it up with pretty warm water as with a product like this you can imagine that the heat that it does provide isn't fantastic but then for the price and time they say you should use it for I am ok with that.

I whack my feet in and I don't know if it is just the warm soothing water or the bubbles but the aches and pains in my feet are swiftly forgotten, they fade away and I can relax. The actual product itself is quite noisy but I can hear the TV over it very easily and can really relax, might be easier with some headphones on though. Not much else I can say about it really other than when I take my feet out they do start hurting again but for about 20minutes I have much less pain and love to relax in this. Since the flu left me I have been trying to use this once a day and enjoy my time in it.

Below is a picture of the foot spa followed by a video of it bubbling away.

The foot spa

I have also started a twitter account, this is going to be much more general than me talking about my foot but may reach a wide audience and help to increase support on the forum which would be great. My Twitter feed is shown in the sidebar and can be accessed by

A painful birthday

Today things have not been good. My birthday which is great but we decided to go for a lab lunch. The place we decided to go to was about a ten minute walk away and then of course ten minutes back when the place was full. The meal we ended up having was really nice but by 2pm my feet we really killing me. I was struggling to stand for long periods of time and there was a lot of grimacing, I changed to my insoles and things were not much better but I kept them on for a bit to see if they would help. Things were not helped by me being busy in the lab, I needed to use the centrifuge a lot which is annoyingly on the other side of the room so I was up and down like a yo yo getting bits and pieces. 

Most of the pain was coming from the location of the plantar fibroma. One thing that was nice today though was that on the way back from the initial place that we tried to get food someone actually said we should go to the closest place because they were worried about my foot. I guess this kind of concern is something that I need to get used to and something to appreciate and is something that more people with Ledderhose would get if we could raise the awareness of it even just a little bit. I think that there are lots of ways of doing this and we just need to get round to implementing them but the thing is timing and money. Timing not just the right time but also finding the time to do it and then money well who has any of that and is willing to contribute any to a thing like this? (Sure I am repeating myself from previous blogs) 

Anyway back to my feet, the pain did seem to ease a little bit after putting the insoles on, still not to the point that I was happy standing or walking for any length of time but any improvement is better than no improvement. Only a week Monday  now until I get to look at my MRI results. I find it hard to believe that it is going to show anything other than Ledderhose but at the same time I can only imagine that it would be a good thing if it did as it is so hard to do anything about it otherwise. 

I am hoping that these orthotics will make things easier as I increase the amount that I am wearing them and that the MRI results will clear things up either way. 

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.

Today with Plantar Fibroma

Today was my first day back at work after Christmas as having had flu I have been stuck at home and not been on my foot. Does my foot hurt more today than it has for the past month? Yes it does.

I have also been trying out my Orthotics and they are ok, just getting used to them and hoping they are more comfortable. I have got the Mrs to have a look and my feet and ankles don't seem to tip over so much but it still remains to be seen whether that is going to last or whether I am going to be able to wear them all the time as well.

Further to my post yesterday my rankings have flown up and the blog and forum are much higher so many Plantar Fibroma help can be found by a few more people.

http://plantarfibroma.freeforums.org/