My experience with Ledderhose disease aka plantar fibromatosis. This information is not intended to replace your doctor. Information on this blog is provided for informational purposes only. You should not use the information on this web site for diagnosing or treating.
For ages I have been wanting to get back into helping Ledderhose patients a bit more. This year I am doing my 2191 mile challenge and boy is that a challenge! You can track progress on the 2191 challenge on either the following blog or facebook page.
We could do with some more followers on the facebook page, even if it is just to share our messages to try and raise awareness. Hopefully running the the vests in helping to raise awareness as well.
I was looking back through some of my past posts and noticed that I have previously made some (not that great?) videos and posted them to YouTube. If you want to watch any of them, and although the sound quality may not be the best I think there is some useful content, you can see them on the following page (at least this works signed in as me!).
Maybe I could make some more videos, things with 2191 are not going amazing I am a bit behind and a few niggles are stopping me from being about to make up the ground that I need to. Luckily Katie is doing an amazing job and hopefully we can reach our combined target of 3191 miles.
In order to try and expand the blog a little bit I am trying to get in contact with specialists that treat Ledderhose throughout the world. At the moment I am in contact with a lit of patients in places like the USA and it would be nice to have had contact with some specialists over there and I have also seen that there are now some places offering cryosurgery in the UK for Ledderhose.
Unfortunately it seems that most of the people I have been in contact with either seem to think that what I have sent them is spam or not worthwhile responding to.
One person who has replied though is Frank Sullivan in Ireland. He does radiotherapy for both Dupuytren's and Ledderhose. I have not asked him for a proper interview as he has only treated a few patients in the last couple of years.
This struck me as a bit odd, Dr Shaffer treats 2-3 patients a week and yet there are several Dr in England that do RT for DD / LD but on the IDS website Dr Sullivan is the only Dr to do radiotherapy for these conditions in Ireland. If anyone in Ireland would like to get in touch with Dr Sullivan he is happy for me to pass his details on.
I asked him why he thought this might be and here is the response that I got:
"Poor awareness of the benefits of XRT amongst both Irish radiation oncologists and plastic surgeons I'd say…especially the latter. I imagine the condition would be as common in Ireland as the UK. I have had some good results (as best as I can tell with short follow up). I use the Nice Guidelines, and the German protocol"
Again I have not been around for a while, this is partly because there is not so much to update people on and because I have been away training as part of my new job.
The new job continues to be very interesting and enjoyable and very much off of my feet and this is such a huge relief. Being off of my feet during the day means that I do not come home in pain and just want to flop on the sofa and as a result I am getting out there and doing more exercise.
Place near work - 1
This exercise is important, I think that since the foot got really bad I have let myself use it as an excuse for continued weight gain and in the last year or so I have probably put on a stone (or two) and now that I am off of my feet during the day and improving the time has come to do something about it. At the moment I am typically getting up before work, 4 days a week, to cycle about 5 miles on an exercise bike and then playing a kind of fitness game on the PlayStation for about an hour in the evening and during my lunch break I am going for a 20 minutes walk as this is something that I can now do (I have nice places to walk to, see pictures). On top of this I am also eating very healthily and I already feel more energetic and so much fitter. I have lost weight in both of the last 2 weeks and probably need this to continue for a couple of years to get down to a good BMI and that is what I am setting out to do (so at least I will have weight loss to keep people updated about if nothing else).
Place near work - 2
Recently I reported that my foot was really dry and actually this became a bit of a problem as the bottom of my foot became tight however a week of using E45 on it has really cleared that up and it no longer seems to be a problem.
The forum continues to have one or two people join here and there and share their story, please continue to do this and hopefully we can find people that were in a similar position to you can so can give you a bit of advice and if not I am always checking it to give my opinion on things. I would like some more people to interview on here as well, I already have a few people lined up for once they have finished their treatments but this takes time, so if you have either Dupuytren's or Ledderhose and would like to share your story than let me know.
I have also been pleasantly surprised by the continued viewings of this blog despite my reduction in numbers of posts and I thank you all for visiting, please do comment, e-mail or post on the forum as the more people we get talking about this the better. Speaking of which I am thinking of e-mailing a paper to see if we can't get a story out about Ledderhose and the availability of Radiotherapy as a good treatment for it in the UK at least. I will of course keep you all updated on how this progresses, certainly there are several out there about Dupuytren's and I think it is time the shoe was on the other foot, it will be great to raise awareness and not just of the disease to the public but to GP's and of course will raise awareness of radiotherapy as a treatment option to patients, which as many people have found out is something you often have to discover for yourself.
Good luck to everyone and I'll keep you posted, but for now I am happy with the way my foot is progressing although I still need the stick and can't stand for long periods of time (yet?) but I am starting to see a light at the end of the tunnel, perhaps I am even out the other end and the exercise makes me feel so positive.
Ok so as I promised I am going to have a look at a thing from
Pfizer called "it is in your hands".
There reason that I am looking at this is of course because Dupuytren's is related to Ledderhose and things that help that might be able to help this. Why are Pfizer involved? Well of course this is because they have the rights behind Xiaflex/Xiapex which is a collagenase injection that can be used to help break down the cords in Dupuytren's Contracture and therefore help to restore normal function of the hand. I have covered it a little bit previously in this post here - Xiaflex in cells.
Well Pfizer are on a mission to try and raise awareness of Dupuytren's and as such there is the website - Dupuytren's Disease - It is in your hands which has some information on Dupuytren's disease. Of course this does include treatment options and to be fair there is a good deal of information there however under non-surgical options they are of course putting Collagenase injections as the best choice.
They also have a stories section where they have video stories from a variety of patients with Dupuytren's disease and they discuss all of the different treatments options that they have had. This is really good to get out there and hopefully it will help patients in the future.
So I guess this site is useful for anyone with Dupuytren's or indeed anyone looking to find out more about Dupuytren's disease, it has lots of stories where you can learn how people are coping with it and what they have gone through but at no stage is there any mention of Ledderhose disease or peyronie's disease. Now I know that Xiaflex has not been shown to be useful but surely under the FAQ they could have it has something to look out for. I think the fact they have not mention them is a disgrace as awareness of Ledderhose and peyronie's disease is probably less than Dupuytren's and what harm would it do to stick it in there? Anyway it is a good site and does have lots of good info.
I actually find the omission of peyronie's disease particularly odd given that this morning I also got a news alert through Google Scholar saying that there is a new paper coming out on the use of Collagenase injections for the treatment of peyronie's disease. The abstract can be found here Sexual dysfunction: C. histolyticum collagenase effective against Peyronie
So as part of this scheme they have also released a bunch of videos which are all available on YouTube, but you can not make comments so not linking to here or complaining about the lack of any mention of Ledderhose disease.
Videos:
I am just going to embed one of these videos but I urge you to visit YouTube and view some more of them as they are very interesting and hopefully will help to raise awareness.
I think that the collection of videos really do help to increase the amount of understanding that some people might have into not only Dupuytren's as a whole but the way in which it can change everyday life. I do think that they could be better, they do only look at one person and from what I can see there is only proper contracture in one finger, the little finger, but I might be wrong.
Summary:
Hopefully all of this helps people to know about Dupuytren's and maybe if they know about Dupuytren's then they might begin to learn about Ledderhose. Maybe this will help gain money for research into these diseases that might one day offer a cure and I am sure the this is something that not only the patients but hopefully also the likes of Pfizer are interested in.
As I said before today at the very least I am going to try to raise awareness of Ledderhose and Dupuytren's disease and see what happens. Even if only 5 more people learn about it that is something. Please help by retweeting or sharing.
Ok so I am hoping that anyone that
views this will be able to help and please comment or just help if you can.
Basically in order to celebrate me starting Radiotherapy on Monday I am going
to try and raise as much awareness of Ledderhose and Dupuytren's on Saturday as
I can. Now what I need is some great ways to do this. The main this I am going
to do at the moment is to try to use twitter. For example on twitter you can
ask people to retweet your message so if I make something like.
"Want to raise awareness for Ledderhose ledderhose.blogspot.co.uk and @Dupuytren's please RT, I am
starting radiotherapy on 21/5." This message is just about small enough to
fit as a tweet but also to get in the @XXXXX at the start.
I can then send this to people like BBC Health who has over 300,000 followers
and ask them to retweet it meaning that their followers see it and might decide
to follow the link. I have no clue if this is going to work but thought it will
be quite easy to try to do. Just need to tweet several places like BBC Health
(@BBCHealth), The Broad Appeal (@BroadAppeal), Cancer research UK, British
Dupuytren's Society, Discovery Health (@Disc_Health), World Health Organisation
(@WHO), Rare Disease Day (@rarediseaseday), Dupuytren Foundation
(@Dupuytren) and several others such as @doc_RT
And potentially
all that I need is one of the ones with a huge following to retweet for example
BBC health with 300,000 or so followers and I might get say 0.1% of those
people having a look (perhaps) and that is another 300 people or so that know
of these diseases. Basically anyone wants to help then let me know and retweet my
message on Saturday (I am @Ledderhose)
I will probably make a post on Saturday morning which will just be a repost of the leaflet so that if people do happen to follow the link and end up on my page they have a simple bit of information to look at that explains what I am trying to tell them about.
As I said please help to raise awareness, the simple thing to do if you are on twitter is just to retweet my post and lets see what happens. People have done great things already through running and I hope that I can do something by tweeting.
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 …
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…”
