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.
Hi, I have HSP too but have not been opened about it. Glad I found your blog.
ReplyDeleteMy condition has gone worse over the years but I'm still walking unaided. However, what I am most sensitive about now is people looking at me oddly and worse, people asking me about it. Does it happen to you and what do you do?