Monday, 29 December 2014

Review of 2014

Another year has passed and its time to reflect on things and consider how different things have become over the year.

Aside from the knowledge of my own symptoms my main knowledge activity this year has been getting further with the analysis of the research papers. This is quite a time consuming task, although it has helped me to appreciate the diversity of research that happens and what topics tie in with HSP. The main publication was early in the year with a study reporting new HSP genes and link with other diseases.

This year has seen a number of firsts - My first appointment with an HSP specialist, my first medication (Detrusitol), and if it weren't for the speed of the NHS system I should have had my first neuro-physio appointment as well. I've also been on a stress/mood management course, seen a bowel specialist and I'm using banisters more when going up and down stairs. I'll have to chalk up 2014 as a year of appointments, although I know already that there will be a fair few in 2015.

This Blog
The readership of this blog continues to increase. I've had more page views in 2014 than I had in 2013. My audience remains broadly the same (predominantly US, UK, Ukraine, France, Germany, Turkey, Russia). The most popular posts are the results of my survey, the various presentations given at the UK HSP Support Group AGMs and my general posts on particular HSP symptoms.

I've had various comments made that people appreciate reading what I have to say, which I'm very pleased to receive and gives another reason why this is a worthwhile thing to do. Just recently I had a conversation with my uncle who commented that when he was first diagnosed with HSP there was not very much information around at all. The most surprising thing I find is that people I know now come up and ask me about it, which I always find quite surprising!

I was really surprised how much coverage and readership the results of my 2013 survey were when I published them on 28th Feb, and this really set the path in motion for doing this every year. I've already got a few ideas lined up for 2015 and beyond.

I'll follow the same path for the 2014 survey - analysis will start in a week or so's time so I can write up to publish on 28th Feb - Rare disease day. There are still a few more days when I'll be taking answers!

No comments:

Post a Comment