I got a letter from my doctor the other day saying I was entitled to a vaccination against flu/influenza. I was a little surprised as I thought I would be the least likely person in my home.
However, according to the NHS website people with neurological conditions are entitled to this http://www.nhs.uk/Conditions/vaccinations/Pages/who-should-have-flu-vaccine.aspx. Now, I'm not sure my HSP is 'chronic' but at least it explains the letter.
I spotted this on one of the Facebook groups.
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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Tuesday, 15 October 2013
Sunday, 13 October 2013
Groups around the world
I posted (about 3 years ago) a list of support groups that I'd found which had websites in English. In the interests of letting more people know about this blog and trying to get some more reponses to my survey I've made contact with all of the HSP groups I can find (thanks to lists on the UK HSP group and Rare Connect). The full list (in no particular order) is:
UK: http://www.hspgroup.org/
US: http://www.sp-foundation.org/
Australia: http://www.hspersunite.org.au/
Switzerland: http://www.hsp-selbsthilfegruppe.ch/index2.php
Spain: http://www.aepef.org/
France: http://asso.orpha.net/ASL/index.htm
Germany: http://www.hsp-verein.de/startseite.html
Germany: http://www.hsp-info.de/ (Tom Wahlig Foundation - a group who funds HSP research projects)
Norway: http://www.regioner.nhf.no/index.asp?id=63230
Italy: http://www.vipsonlus.it/
Denmark: http://www.sca-hsp.dk/index.html
The Netherlands: http://www.vsn.nl/ (neuromuscular disease group)
These groups are all in Europe, North America and Australia, and this grouping of countries therefore provides some support for HSP sufferers covering about 15% of the worlds population, so I'm wondering how people with HSP in the other 85% of the world get their support. (I accept I've made a number of gross simplifications here).
If any readers know of support groups/communities/websites for HSP in other parts of the world, I'd love to hear from you.
UK: http://www.hspgroup.org/
US: http://www.sp-foundation.org/
Australia: http://www.hspersunite.org.au/
Switzerland: http://www.hsp-selbsthilfegruppe.ch/index2.php
Spain: http://www.aepef.org/
France: http://asso.orpha.net/ASL/index.htm
Germany: http://www.hsp-verein.de/startseite.html
Germany: http://www.hsp-info.de/ (Tom Wahlig Foundation - a group who funds HSP research projects)
Norway: http://www.regioner.nhf.no/index.asp?id=63230
Italy: http://www.vipsonlus.it/
Denmark: http://www.sca-hsp.dk/index.html
The Netherlands: http://www.vsn.nl/ (neuromuscular disease group)
These groups are all in Europe, North America and Australia, and this grouping of countries therefore provides some support for HSP sufferers covering about 15% of the worlds population, so I'm wondering how people with HSP in the other 85% of the world get their support. (I accept I've made a number of gross simplifications here).
If any readers know of support groups/communities/websites for HSP in other parts of the world, I'd love to hear from you.