British Dupuytren's Society Membership

If you would like to become a member of the British Dupuytren's Society, please fill in the form below. We will use your details to keep you informed about our work, updates on research and clinical trials and opportunities for fundraising and get together events.  By signing up as a member you agree to us sending you our quarterly newsletter via email and any other ad-hoc communication. We will not pass your details on to any third party organisation.

We are hoping that this new way for us to communicate with patients will increase patient awareness and participation in activities which in turn will hopefully lead to better access to the facilities that patients require and patient input towards the charity goals. 

http://goo.gl/forms/yRCyHMpc8D

Help us continue our work supporting people with Dupuytren's, Ledderhose and Peyronies, take this simple action, sign up to Give As You Live and every time you make a purchase with a supported website, BDS will receive a donation. http://www.everyclick.com/bds/info

What is it like to have Ledderhose?

There are many different thing that I could post about today. As I said I am planning on doing a post from my book very soon and I am also planning on doing a post on radiation as this may well be the next course of action that I have to take and sure enough I will do that soon and have already started to find out information on this and have found there is not a lot out there on Ledderhose so perhaps I will have more success with Dupuytren’s?

But today I thought that I would do a little post on what I find it like to live with Ledderhose disease. I know there are many people out there with the disease and it would be interesting to see how my experience compares and  also this might be useful for those who don’t have the disease and want to understand what it is like for someone who does have it.

So what is it like to have Ledderhose disease?

Well for one thing you tend to have pain in your feet (or foot) more often than not and for a lot of people this may not be an issue but I work in a science lab. For people that don’t work in a lab which I imagine is most people that are looking at this then let me tell you that you spend a lot of time on your feet as you will need to go to this machine to do that or this bench to run that thing or even to the special lab to do that work or the other lab to use their machine and then upstairs to get some pains and down the corridor to get to a seminar. I reckon that on a normal day before I got this thing I would spend at least 6 hours on feet but I have since managed to cut that down by moving some of the above mentioned machines to my bench space and this has helped to some extent.

Still as I said you have pain in your feet for a lot of the time and although it may be minimal there is pain in your feet (at least in my case) pretty much all of the time and only on the really good does is there nothing to complain about. The pain that be pretty intense and I suffer from it in several different ways. So firstly there is the obvious pain that you might expect that is associated with the lump. If pressure is applied to the lump then WOW that hurts and a lot of the time the background pain radiates out from this point. Actually describing this pain is not that easy I mean basically imagine that you have ½ marble sticking out the bottom of the arch of your foot and every time you step you apply pressure to it… sounds nice doesn’t it? So other pain I have is also found in the toes of my feet, right at the base of the toes and it runs along the entire foot. I have to say that I am not 100% sure what causes this pain but it hurts quite bad. I also then have it when I get twinges in my foot and this can come from nothing and can be when I am in bed or when I am playing on the playstation and these really hurt a lot.

Ok so that is the pain dealt with but there is more than that. I mean I used to love playing badminton and going for a run and things like that. Now though I don’t play badminton which is a shame as I loved thrashing everyone and I enjoyed running and now I can’t do those. It extends further than that though as when we are going out we have to think ahead to what we are doing and where we are going to park and I am going to have to spend much time on my feet and when can we rest my foot. This gets annoying as it reduces our ability to do this spontaneously.

On the bad days you think about the future and how can I teach my kids to play football when I struggling to walk and how I am going to stop my weight ballooning when I can’t do the exercise that I want. The thing though that I hate the most is the helpless feeling that I have. I mean what treatments are there? I have had steroids, I have been to a physio, I have Orthotics and I have tried everything we can think of to get my foot to feel better. There is nothing left on the NHS but surgery and it has a high recurrence rate and a big chance of problems so what can I do.

The good things though are you realise just how much everyone loves and supports you and if anyone wants to donate to my wife and family who are raising money for the British Dupuytren’s Society then please donate here or make a pledge on facebook as for the time being this is the only way of us doing it as they are such as small charity.

Facebook page here:

http://www.facebook.com/GarysFeet

Just another day

Woo I have made an appointment and woo my wife is now a fully qualified driving instructor well done :-). 

So today I managed to make the appointment to see the foot specialist again. I made it for the earliest possible time that they had which was 3pm on Monday 2^nd April. It was not as simple as me just phoning up though, not  of course as with everything else regarding the treatment I have had (with the exception of the orthotics) it had to take a bit of a rough trip to get there.

So first of all I phoned up and they said that I had been discharged despite the fact that the specialist has promised not to do this so I was very annoyed at this point. For anyone who is not aware this is what happened to me last time. When I was in a different hospital I went to an appointment after my steroid injection and said look yes it is a little better. Then in a few months it got bad again and I tried to make an appointment and they said oh no you got discharged you need to get referred again.

She then said she would look for the letter to see what it said (my discharge letter) and she couldn’t find it. I then had to explain what happened in the appointment and that the guy said I could go back when it got worse.

Hmm she said I will have to have another look for the letter, she then proceeded to hunt around for it and eventually she found something that agreed with my statement and so after putting me back on the system I was able to make an appointment. Still what should have been a no stress, 2 minute phone call turned into a slightly stressful 10 minute phone call.

I guess at the end of the day I got an appointment and that is all that counts and the appointment is for a date much closer than I was expecting and actually much closer than anyone else was expecting. 2^nd April is actually the day after we are celebrating my Nan and Grandads 60^th wedding anniversary which is a fantastic achievement.

On other things my foot was of course painful again today. This seems to be the case everyday now and if anything the time at which it starts getting bad is getting earlier and earlier. I have also been writing the much anticipated book that will have a main character the develops Ledderhose (basically it is my story but slightly different) although I doubt that 1) I will finish it, 2) I will let anyone else read it and 3) that anyone else will want to read it. Still if I do 1) then maybe I will be proud enough of it to do 2) and then maybe it will actually be good and some people will read it and it will raise awareness for Ledderhose and Dupuyten’s and I am sure that I will advertise the British Dupuytren’s society (BDS) in there and maybe that will help them gain money.

I have heard from them today and I have rattled off a few questions to ask them and I am awaiting their response, if anyone wants me to ask someone questions for them then just let me know. They are also no in the process of joining myDonate by BT, this should make raising money for them through sponsored events much easier and is better than the alternatives like Just giving as it is free for the charity.

I think that is enough for now and I hope to get round to doing another post from my amazing book soon enough.

The British Dupuytren's Society

The British Dupuytren's Society is a small UK charity for people affected by Dupuytren's Contracture, Ledderhose Disease and Peyronie's disease:

Today I am going to do a blog post on the above charity, as you can see from the description I have posted they do work for people with Ledderhose as well as Dupuytren’s and Ledderhose so I urge you to visit their site.

Firstly I would also urge you to follow them on facebook and twitter …

Facebook –  http://www.facebook.com/britdupsoc

Twitter - @Dupuytren

Ok so I am not going to make a huge post as I am hoping to do an interview type thing with them in order to get a better and more in depth idea of what they do and where the money goes. For now though I do have the following from an e-mail that my wife received.

“The British Dupuytren's Society will be giving a talk to the British Chiropody and Podiatry Association later this month, hoping to spark a dialogue on creating a national approved treatment protocol for Ledderhose. This is an example of where we use donations…”