Monday, 24 November 2014

News, results and another survey

Recent weeks have been very interesting. Although I have not posted many blog posts or particularly had many page-views I have been fairly active. Instead of my usual activities I have been trying to raise awareness, this is not something that is easy to do for a rare non-life-threatening condition however I have had some success.

I have had interest from 2 local papers, one is hopefully going to publish an article this week and the other one I will contact again once we have had sufficient time to see if a Dupuytren’s patient that has had Xiapex can be found. The other development is that I had BBC over to interview me yesterday and they are going to run a piece on BBC South East today, including an interview with Dr Shaffer and this may then lead to a post on the BBC website. How amazing would it be to have an article on Ledderhose on the BBC website potentially linking to this blog and Dr Shaffer’s website? They did make clear that this is only a maybe but that is still a better situation that we were in last week.

Hopefully the media exposure will not stop there and I can use this momentum to try and get something out there that doesn't just cover the South-East, any ideas or contact you have are of course welcome.

Don’t forget that the deadline for submission of patient information for the survey is fast approaching and if you haven’t already filled it out it would be great to have as many responses as possible. 

I am still collected results for the following mini-surveys as well, it would be great to have more information on these to get a better understanding of any significance or not in the results:

Actually look like that is the only one as the initial look into the blood types showed no real difference and doesn't look like it warrants further investigation.

Preliminary results from the large survey appear to indicate that Dupuytren’s, as expected has a higher incidence in men but conversely Ledderhose has a higher incidence in women (or at least more women with Ledderhose have responded). This doesn't surprise me as I have probably been contact by more women than men however it does give rise to an interesting questions, why?

I can’t remember the exact figures but it was something like 55:45 men women for DD and vice versa for Ledderhose, numbers this close suggest to me that it is not likely to be the genetic element that plays a role meaning it could be environmental.

Graph outline the total percentage of male and female respondents with either DD or LD

The classic example here would be trauma, in men the example is that the hands are injured during manual labour and careers such as working in a mine or using the large power drills are thought to have an impact, some people have even noted a high level of musicians in Dupuytren’s patients. So what could be causing this for Ledderhose that provides an increased risk to women?

I have tried to think outside of the obvious and I am willing to have suggestions however the only thing that came to mind was that women almost exclusively wear high heels and perhaps his could account for the difference. After all we are only looking for something to account for the 10% difference in Dupuytren’s, so it could be that (purely hypothetical numbers) 80% of Dupuytren’s and Ledderhose patients are not caused by trauma and therefore you have 40% women and 40% man. In the remaining 20% we then see the difference, where for Dupuytren’s trauma is more likely in a man so this leads to the 55:45 split in favour of men whilst in Ledderhose trauma to the foot is more likely in women so you get the 55:45 split in favour of women. Something that can be discussed much more in the future when all results are in however I would love to start asking patients whether they have had any trauma etc to see whether can find any relevance.

Entries are also still open for the blog awards, you can vote for me here.

Progress on the Ledderhose disease patient guide is slow going, for some treatments I am still trying to get more people, mainly surgeons, involved but I am hoping that the end of next year is a realistic target if I find time to really get my teeth into it. 

I am currently collecting the results of the patient series for this month and hopefully will have them all ready for the weekend so I can share how everyone else is getting. 

Hope every one is finding something that helps their feet, for those in the UK be sure to keep your feet warm for the winter, I always find the cold makes it hurt that little but more.