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. 

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.

What are people interested in Ledderhose disease interested in?

Ok so today I found with myself with 5 minutes and I thought about why is it that I am getting so many page-views at the moment and hopefully helping lots of people. So I went to the blogger stats page to have a look at what pages people are looking at (pages not posts, pages are listed at the top, so treatments etc whilst posts are every different entry I have made). This is something very important for me to look at so I know what people find the most useful so I know what to continue generating new content on. 

From my point of view as a Ledderhose patient I knew exactly what I was looking for when I was trawling the net looking up Ledderhose, I was of course looking for a cure for Ledderhose so I was looking at lot at all of the different treatment options. The problem with just looking at those though it that you don't get an idea of what it is like from a user side of things so I was also looking for personal experiences and people to talk to. Sure enough if you look at all the pages the top two are the treatments page and the patients interviews page and one of the top 5 posts in the forum one (though disappointingly few people are joining and sharing their experiences). 

Basically people want to hear what can help, who has had it and how it go and how can I communicate with these people. I think with this being something that is relatively uncommon I am not surprised that wanting to find other people with it is one of patients top priorities. Hopefully I can add to my interviews with some more Ledderhose and Dupuytren's patients (any volunteers are welcome) and hopefully I can get Dr Shaffer to answer a few questions during my visit in July. Meanwhile here are some graphs showing the statistics I am talking about above and also let me know if you know of any professional who work on Dupuytren's and or Ledderhose who might be willing to have a chat. 

Bar Graph showing the total number of pageviews each page has had (excluding homepage)

Pie chart showing the total percentage of pageviews each page has had (excluding homepage)