Wednesday, 27 December 2017

Review of 2017

As we draw to the end of 2017 it is time for me to reflect on this years goings on.


This year has seen less new knowledge going in, but there have been several times when I've needed to look back at knowledge gained previously, thereby fulfilling one of this blogs purposes: to act as a memory dump. During the year I've looked back on my posts on depression and my work on misdiagnosis. I've also been contributing to the knowledge of others in a new way by taking part in the HSP falls study for Plymouth University (UK) and the CREATE Daily Living Scale study.


Generally it has been another year of no significant change. I think that my distance may be becoming limited due to HSP, but I've not tested that properly yet. 2017 has seen the continuation of tracking my cycling with Strava and I've started tracking plenty of things with FitBit, so there is plenty of data for me to look at and see if I can spot any patterns. On the other side of the coin, during the year PatientsLikeMe changed their website so I've lost a couple of trackers I found useful there. The main 'big' thing this year has been the MRI scan, but nothing on the results of that yet.

This Blog

I'm really pleased with the continuing growth in readership of this blog! My audience remains broadly the same (predominantly US, UK, Russia, Ukraine, France, Germany, 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 now have a full year of Google Analytics tracking to compare with the blogger tracking, so expect some analysis on that in the new year! Various blog posts are being linked to and used within other HSP and RareDisease publications, so I feel like a bit of an information conduit now. Thank you to all my readers.

I've had various comments from people appreciating what I have to say, which I'm very pleased to receive. Feedback like this gives me 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. A couple of my favourite comments about the blog from this years survey are:

"I'm interested to hear how you are progressing with symptoms as I feel like the only guy on earth that has this condition. Your blogs make me feel like I'm not alone"
"Great to read how you approach every day problems"
"It is superb and very informative - I have gleaned a lot of useful info over the past few months and hope to be able to put much of it into practice now I know what I am dealing with."


The now annual pattern of my surveys is well established. Each year I get more responses than previously, and this year is no exception. I've now got around 190 responses to start analysing in 2018, which is brilliant! If you're reading this and want to take part then (providing it is still 2017) please do! Results will be out on 28th Feb after the majority of analysis during January.

Similarly, its good to get feedback on this. Two of my favourite comments from this year are:
"I felt like your questions were right on target for capturing most of the issues I'm facing."
"It is nice to be asked relevant questions!"

Community Contribution

HSP Community activities for 2017 included:
  • Being elected chairman of the UK Support Group!
  • Taking part in research projects (as described above)
  • Starting to talk with people from other HSP groups
  • Convincing the UK HSP group to join EuroHSP
  • Analysing and reporting the results of my survey to share with the HSP world
  • 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.

Obviously, becoming chair of the HSP group is a big change for me, and I'm working with the rest of the committee to ensure that the group continues to support its members in the most appropriate way. There are several channels of discussion going on.

HSP in the news

There have been a couple of people with HSP in the UK news during 2017, both children. 

Firstly, Lily Rice became the first female from Europe to perform a backflip in a wheelchair - and

Secondly, right at the end of the year, Archie Blomfield has been chosen to play the lead role of William Trundle in the Christmasaurus alongside McFly's Tom Fletcher at the Hammersmith Apollo in London.
My youngest son is a dinosaur fan, and we read this great story last Christmas.

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