Welcome

Welcome to the Ledderhose disease (plantar fibroma) blog.

My name is Gary and I am the author of this blog. I am a ledderhose patient from the UK. I am an ex-scientist and hold a degree in Molecular Genetics and I try and put this experience to good use exploring this condition.

I have pages here about the treatment options, patient experiences including my own, insights from medical professionals, explanations of the science and whatever else I think may be useful for fellow patients. Through the blog I have made contacts with many patients, professionals and charities and now work as a trustee for the British Dupuytren's Society.

Hopefully you can find the pages you want using the navigation menu above or use the search box to look for specific information.

Hope you enjoy reading the blog and please contact me at ledderhosedisease@gmail.com or leave a message on here to get in touch. All information will be kept private unless you tell me otherwise.

Thank you for visiting.

Wednesday, 15 October 2014

300th Post!!! The future

I can't believe this is my 300th post, this is also a post to finally celebrate 150,000 views (actually up to over 155,000 now) and also it is close enough to 3 years since I started the blog I'll throw that in as well. I know overall that doesn't equate to that many posts per month but the number is significantly reduced since I got much better and I am mainly limited to new developments, surveys and patient or professional interviews. But the new project to get monthly updates from a group of patients should help to not only keep everything updated but also to give an even broader view of patient experiences with this condition. I wonder how long it will take to get to 500 or 1000 posts????

When I started the blog the logo looked something like this, I hadn't even seen or read Harry Potter at the time!
There have been a lot of developments since I started the blog, and it is weird to think that in May I will be co-presenting at the International Dupuytren's Conference, shows what you can do when you put your mind to something, though it probably needs to be something you really care about. I have tried to start other blogs but as yet none of them have worked out or even really gotten off of the ground and that is because I care about this blog, this condition and fellow patients and therefore want the blog to succeed. We now have a great Facebook group with patients and doctors and it is good to see the activity and sharing of information that we have going and the interactivity that we all have.


Picture of my orthotics and
normal insoles
Despite the development over the years there remains a post that is number 1 in terms of page-views, comments and just about everything and this is the first post that I created where I tell my story from the beginning. I should really rewrite the post with more flare or in other words a more depth version of my patient experience on Dr Shaffers' website. Certainly when things calm down this will be one of my first posts.






A look ahead:

The famous lump
Of course I cannot be sure what the future holds, there will always be lots to do and a lot of patients to help, a lot of doctors to talk to and clinical trials to follow. I would love to be able to work on the blog full time but of course this is not possible. There are many projects though that I am really keen to initiate or at least research to the best of my ability:

  • A patients guide to Ledderhose / Plantar Fibromatosis (as an eBook) and depending on success a Dupuytren's one. 
  • An on-line patient database to collect information on all patients over a wide variety of areas to allow analysis on every aspect. 
  • Following the "other" patients series (should be starting soon). 
  • Analysing and presenting the patient survey results - Will collect sample dataset at the end of the year, it has been an amazing response already. 
  • Ask all the websites that say this condition is not painful to get their facts straight.
  • Continue to group the Facebook group so we have even bigger group of amazing people to help every new patient that joins. 
  • See how the UK Blog awards go and if needed come back stronger next year! 
  • ........And I am sure much much more. 
For now I would like to thank everyone for the support they have shown over the last 3 years, all page-views, all the kind e-mails and comments on here and Facebook help to keep me motivated and look to improve the information available. Undoubtedly the highlight of having the blog is the smile I get every time someone tells me the information on the blog changed their lives. 

Friday, 10 October 2014

New Idea

This post is actually my 299th post and in just under a month it will be 3 years since I started the blog, how things have not gone as expected but that is for another post (probably the 300th one?). 

The new idea is based on the fact that my condition does not change significantly any more (and long may that continue) and therefore I thought it would be great to track 10 or so other patients on their experiences. I will track these patients using a set of questions that are designed to give an overview of their experience and also allow them to give individual feedback. Hopefully patients from around the world and at different stages having had and going to have different treatments will agree. If you are interested in doing this then please click on this link and fill out the very short form, I will then get in touch and go from there. Ideally I would like this to last at least a year so please only contact me if you are willing to update me once a month for the majority of those months.

If this is something you are interested in participating in then please complete the following very short form:

http://goo.gl/forms/b70k5VrT6n

I have many things that I want to do at the moment, many ideas of way to generate a little but of income through the blog to spend on the blog to enhance features and raise awareness. 

I have also just had an e-mail through from the UK blog awards saying that my entry has been accepted and that voting starts next month (more details to come soon). I imagine that I am going to be up against strong competition so I don't expect to get any further so when the time comes if anyone that can spend a minute to vote that would be appreciated.