I'm pleased to announce that my 2018 on-line HSP survey is now open. This year I'm looking at:
* Activities of daily living
* Support group membership
I'll collect data until about the end of the year and analyse by end of Feb 2019. I'd be really pleased if people with HSP could take the time to answer my questions!
almost 2 years agoSurvey for people with HSP now open.
If any readers have HSP I would welcome 25mins of their time to answer questions in my on-line survey this year. I am covering:
* How HSP affects peoples jobs/occupations
* Factors that affect walking
I'll collect data until about the end of the year and analyse by end of Feb 2018. I'd be really pleased if people could take the time to answer my questions!
Early results show: 80% consider themselves disabled. 80% get pain from HSP. 80% cannot walk as far as they want. 40% are in work, 30% do not work. (other 30% retired/student/carer). I would love some more data.
over 2 years agoHappy Rare Disease Day everyone. I'm very pleased to publish the results of my 4th online survey for those with Hereditary Spastic Paraplegia (HSP), covering fatigue, bladder & bowel issues. 169 people responded. Headlines are:
90% with HSP have moderate or severe fatigue
Fatigue is generally independent of level of mobility
One third with HSP have moderate or severe bladder effects
Increased frequency and incontinence affect the most
One third with HSP have moderate bowel effects
Bowel urgency and hesitancy affect the most
Most get HSP information from social media, doctors and neurologists.
over 3 years agoI have HSP. There are plenty of places to find support if you have HSP. There are groups in:
* UK http://www.hspgroup.org
* US http://sp-foundation.org
* Australia http://www.hspersunite.org.au
* others throughout Europe http://eurohsp.eu
There are also other on-line communities:
* RareConnect https://www.rareconnect.org
* PatientsLikeMe https://www.patientslikeme.com
I regularly blog about my experiences with HSP:
There is a good number of HSP groups on Facebook covering different aspects. There are groups associated with the different support groups above and others focussing on (for example) Research, Parents of children with HSP, Christians with HSP, Teenagers with HSP. There are groups in many languages, but being English I mainly see the groups in English in my search results.
I am happy to be contacted by researchers and others about HSP