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.
Wednesday, 22 February 2012
Some more website links
During my surfing, I've found a few more links to useful things:
A federation of national HSP support groups covering Denmark, France,Italy, The Netherlands, Norway, Spain and the UK:
http://sites.google.com/site/eurohsp/who-we-are
The HSP entry in the rare diseases community - links to support groups and plenty of recent posts with peoples stories. I'm pleased to see that there's a link to this blog here!
http://www.rarediseasecommunities.org/en/community/hereditary-spastic-paraplegia?
Some 2011 research giving a detailed account of the biochemical workings of atlastin, a protein produced by one of the genes linked to HSP:
http://www.sciencedaily.com/releases/2011/07/110708124544.htm
A blog post reporting some research from 2004 into how spastin is involved in neuronal communication.
http://scienceblog.com/community/older/2004/2/20041849.shtml
Another site with a summary of the condition:
http://www.asktheneurologist.com/hereditary-spastic-paraparesis.html
And just for fun, the misspellin version of wikipedia. p.s. its not may fault of you spend hours just looking up other stuff on this page!
http://www.wikipeetia.org/Hereditari_spastic_paraplegia
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment