Saturday, 26 December 2015

Review of 2015

Another year has been and gone and its time for me to reflect on things and consider changes that happened during the year.


I have had quite a busy year, so it has been difficult to find the time to undertake much investigation into HSP research, although I have found a few things here and there. The new find is the HSP maps, and my own contribution on this front. I have a good few ideas ready for some time in 2016 (hopefully!)


Quite simply, this has been a year when I am starting to notice more and more symptoms. I now have insoles in my shoes, and we are working out if I should get AFOs as well. I'm now doing stretches twice daily, and I can spot a difference in my mobility if I miss even a couple of sessions out. I'm taking medicine for my bladder, which continues to help. In more general terms I'm finding I'm using banisters to get up stairs almost all of the time, and it is becoming more tricky to swing my leg over my bike seat.

This Blog

The readership of this blog continues to increase. I'm continuing to get year on year reader growth, and I've now got a page up detailing these statistics. My audience remains broadly the same (predominantly US, UK, Russia, Ukraine, France, Germany, Turkey, Canada). The most popular posts continue to be the results of my survey, the various presentations given at the UK HSP Support Group AGMs and my general posts on research and 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. Thank you to anyone that makes a comment or connects up some other way.


I was pleased that the results of my 2014 survey got similar levels of readership to my 2013 survey, confirming that these are of use and interest to people, and backing up my decision to do one each year. I had a couple of conversations about my 2015 survey after I launched it, suggesting that some other opinions may be useful going forward. I think that I will begin to repeat some aspects of some surveys in order to get some long term trend data.

I'll follow the same path for the 2015 survey - analysis will start in the new year so I can analyse, write up and publish on 29th Feb - Rare disease day. There are still a few more days when I'll be taking answers!

Community Contribution

This year also marks the start of my wider contribution to the HSP world by becoming a member of the UK support group committee. More on that in 2016, I hope. I am also keeping a slightly wider look out in the rare disease world with some posts on twitter and signing up to mark2cure.

Tuesday, 22 December 2015

Rare Disease Day - the HSP push, Survey reminder

Next year rare disease day falls on the 29th Feb instead of the 28th, its a leap year.

There's a big push to get HSP more publicised on this date with the launch of the Potato Pants HSP brand, and the tagline Taking steps towards a cure. You may be able to spot various things popping up on the HSP groups. Get in touch with your group and find out if you can help.

Not sure where potato pants came from? - Lori Renna Linton came up with the idea in an off-the-cuff remark about what its like living with HSP. She is trying to get on the The Ellen DeGeneres Show in the USA. You can help promote this too:

Talking of Rare Disease Day, there is still time for people to enter my survey. I'd welcome people to spend a few minutes telling me about the modifications that they have made around the home to help them to live with HSP. I'm going to be doing the analysis in the new year, ready for my own rare disease day event. I've nearly got 80 responses now, and it would be really good to break the 100 barrier if possible. You can find the survey here: