Review of 2016

Another year has past and its time for me to reflect what has happened during the year.

Knowledge

This year I have learnt a lot. I have been to two conferences - the drug re-purposing one run in London by Findacure in February and the Ataxia/HSP one run by the Spatax network in Paris in April. Lots of bits of information has gone in, and I've been talking with various researchers and professionals at both conferences. I've also kept a brief eye out on the news reported by the US and Australian HSP groups.

Symptoms

Overall, I think that 2016 has been fairly stable. I'd been thinking that things were getting gradually worse, but my appointment at the HSP clinic suggested that my gait might be better. The various stretches, in-soles, bladder medication and Pilates mean things aren't changing quickly. Looking at my charts I think I've been a bit less depressed and with less fatigue than previous years, I might be spotting the return of more bladder/bowel issues though.

For a while during the year I logged my sleep patterns, and I'm fairly confident that my fatigue is predominantly due to lack of sleep, rather than any HSP issues.

This Blog

As last year, the readership of this blog continues to increase. I'm continuing to get year on year reader growth. 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/posters given at meetings 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 with me in some other way.

Survey

I was pleased that the results of my 2015 survey got similar levels of readership to my 2013 and 2014 surveys, confirming that these are of use and interest to people, and backing up my decision to do one each year, this year seeking opinions on matters to survey from others. I was very pleased to present the results of my first three surveys at the HSP meeting in Paris.

I'll follow the same path for the 2016 survey - analysis will start in the new year so I can analyse, write up and publish on 28th Feb - Rare disease day. This survey already has more responses that my other surveys, and there are still a few more days when I'll be taking answers!

Community Contribution

HSP Community activities for 2016 included:

• Attending the drug re-purposing and HSP conferences on behalf of the UK Support Group.
• Using my network (thats you!) to unlock HSP on the Re(act) community
• Being an active member of the UK Support Group committee.
• Publicising my companies volunteer days benefit by reporting what I've used them for.
• Seeking out other on-line HSP communities principally to spread the word of my survey
• Continuing this blog and posting/discussing HSP things on twitter.

I reflect that there are opportunities for better communication between similar condition support groups, to make the journey of mis-diagnosis potentially easier.

How far does my blog reach?

One of the questions I wonder about is where in the world do people live who read my blog. Blogger statistics give me the top 10 countries where people have clicked through to this blog, and I've been keeping track of this, and you can see this tracking on the blog statistics page http://hspjourney.blogspot.co.uk/p/blog-statis.html. My general observation was that readers are predominantly in the UK and US, and there is a reasonably consistent set of other countries where there are readers, frequently being in the top 10 on a monthly basis. Other countries do pop up on a weekly or daily basis, but there didnt seem to be much of a pattern.

Why do I ask this? Most of the HSP groups that I'm aware of are in the UK, US, Europe and Australia. There are a few groups from other parts of the world on Facebook. I'm trying to share my blog as far as I can, and I was wondering which other websites might be worth my visiting. A couple of years ago I found this link:
http://www.smartplanet.com/blog/bulletin/map-the-countries-where-google-and-facebook-dont-rule-the-web/31343 with data from 2013 which shows that Google and Facebook "rule the world" as far as most frequently visited websites go. I've not found an updated version of this map, but the late 2016 position for global websites is here: http://www.alexa.com/topsites and you can see that YouTube is in position 2. My initial thought was that I've got Google and Facebook covered - and its just a question of making sure I'm well searchable!

In discussion with colleagues at work the other month we were discussing Google Analytics, and I enabled that on this blog back in April 2016. This gives a much more comprehensive set of data, and I'm looking to work out how to integrate this information with the Blogger statistics for my long-term tracking.

Headlines are that since April 2016:

25% of my readers are return visitors and 75% are viewing the blog for the first time. There have been over 2000 individuals view the blog in that time, spending on average 2 minutes to read 3 pages.

The top 10 countries are similar to that shown by Blogger (percentage is number of times visited):
1. United Kingdom (33.55%)
2. United States (23.83%)
3. Russia (5.44%)
4. Canada (4.56%)
5. Brazil (3.94%)
6. Australia (3.80%)
7. France (3.55%)
8. Netherlands (2.16%)
9. Italy (2.06%)
10. Belgium (1.57%)

Overall there have been readers from 75 countries. I've had readers from pretty much every European country, the majority of the Americas, Oceania, and Asia, and perhaps a fifth of Africa. There are 26 countries where average time spent reading the blog is more than 1 minute.

Most visitors arrive via a search engine (34%), a link from another site (23%), visiting directly (23%) or through social media (19%). The other site links include the US, UK and Australian group websites (sp-foundation.org, hspgroup.org and hspersunite.org.au) in the top 5, and a few of the European groups a bit further down the list. The social media top 3 are Facebook, Blogger and Twitter,

Conclusions

My blog does get quite far around the world, but there are some corners of the world where there are people with HSP where I dont know how they get their information. I'd welcome websites/info if you know any other groups than these: http://hspjourney.blogspot.co.uk/2013/10/groups-around-world.html

A big thank you to all readers, wherever you are in the world!