Interestingly, FaceBook told me earlier that 23rd June was also the date when I put mu my first poster at the Spatax meeting in 2016, so it looks like this may be a memorable date for me!
If you'd like to go back to where it all began - follow this link: https://hspjourney.blogspot.com/2010/06/my-history.html
If you'd like to see about my 2010 Spatax poster - follow this link: https://hspjourney.blogspot.com/2016/06/international-meeting-on-spastic.html
What with Coronavirus taking a fair proportion of my time (in one way or another) since March, I've not really had a chance to make lots of noise about my survey results - I'm planning to do that a bit more after the AGM for the UK Support Group (4th July - https://hspgroup.org/) and before I launch my 2020 survey in September.
My 2019 survey results are here: https://hspjourney.blogspot.com/2020/02/2019-survey-results.html
The key points on medication is that there is no single point source of information for this, and many drugs that people are taking dont have published results showing benefits for those with HSP. Regular travel, music and exercise were shown to suggest better wellbeing, and being lonely/isolated and needing to take many medicines suggested lower wellbeing.
I'd like to thank everyone who has taken the time to read my blog posts over the years - regularly, occasionally or just by chance! I get lovely feedback, and I am pleased to know that what I say helps others on their journey with this Rare Disease!
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