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
This blog records my journey to Hereditary Spastic Paraplegia (HSP, also known as Familial Spastic Paraparesis or FSP). I was diagnosed with SPG4 in 2009 when my wife became pregnant with our first child. I currently wear insoles, do daily stretches and weekly Pilates. I take medication for my bladder. I tweet about HSP, RareDisease and other things @munkee74.
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Saturday, 19 May 2012
Sunday, 6 May 2012
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.