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.

Monday, 24 July 2017

RIDD Trial Recruiting Dupuytren's Patients

Anna and I had a phone call today with Prof Nanchahal and the progress that is being made on the RIDD trial. It was good to hear that part 1 has gone really well and they are moving onto a larger study for part 2. Hopefully this trial could led to a new treatment for Dupuytren's and potentially Ledderhose. 

For part 2 of the trial they need over 100 patients with early stage Dupuytren's. Currently they have a centre in Oxford, soon to have one in Edinburgh and then are looking to introduce one in Europe. We have been told they are covering travel costs so don't worry too much about being in the area near the treatment centres.

My understanding is that for 1 year you will be treated with injections every 3 months followed by a 6 month follow up so you will need to be able to get to the centre on several occasions. 

If you have early stage disease and are interesting in learning more and potentially participating in the study then please here to this link. It includes more information on the trial and what they are doing. 

The results of part 1 are being worked on and will be published soon and the protocol being used is available here.

Monday, 5 June 2017

Popular posts and pageviews

Was looking at a few of the stats from the blog the other day and it has now passed 350,000 page views which is pretty cool and I was interested to see where the majority of those page views have come from, in terms of which pages were getting viewed as this is a great indicator of what people are interested in. 

The most popular post by far is my original post that I have expanded over the years. It is just a share of my experience, this is why I love to add interviews when I can. This post also has a lot of interaction with over 100 comments which is great. 

Another great source of information is the doctors interview with Dr Spilken. The clinic is still running although now being run by someone her mentored. I am not sure why this interview is so popular but it is probably because there is very limited information on the net about cryotherapy / cryosurgery. Indeed it is one of the treatment options that I wish there was more information about, much like the injections that Dr Davis does, the treatment sounds great but I struggle to find significant scientific publications or patient experiences to back it up. I have had another look and put put another request for patient interviews but I am still unable to get more information out there on cryosurgery or the injections, if you have been treated by either of these or have any information then please do get in touch. 

In terms of posts on treatment options it is actually the page on orthotics that gets the most views. I don't have that much information on orthotics so I will be putting a few feelers out there to see if I can get any more information and details on how they can be of use in both relieving pain and correcting gait for Ledderhose patients. 

In completely random news we have also recently had another addition to our family which has been great fun, see below!