Another community

In my search for different on-line HSP communities I found "patientslikeme". This site has an HSP community with 56 people with the condition.

Personally, I'm reluctant to join this community as they sell users information in order to make profit, therefore I'll just mention this for information.

http://www.patientslikeme.com/conditions/493-hereditary-spastic-paraplegia

Joining Communities

In the last few weeks I've changed my policy slightly - from a passive to an active contributor. 

Previously, other than telling my immediate family, I'd been staying silent about my blog. Naturally I'd been keeping my eyes out to see if had been popping up anywhere. And, until a month or two ago it seemed to be 'under the radar' then I spotted it on rarediseasecommunity - now called rareconnect.

So, I joined up with rareconnect, and posted a link to this blog: http://www.rareconnect.org/en/community/hereditary-spastic-paraplegia/article/link-to-my-fsp-hsp-blog

I also joined the hsp support group http://hspgroup.org/, and am starting off letting members know about this blog. With hindsight, I cant find a good reason why I hadn't sign up here earlier, but done now.

I'm not one for 'shouting from the rooftops', so this will be a gradual process.