Adam Lawrence, CEng.
I live in the UK. I was diagnosed with HSP in 2009, having inherited SPG4 from my mother. I decided to keep a diary of my progression, which I write as a blog. I am a member of the UK HSP Support Group. At their 2013 AGM Dr Krishnan Padmakumari Sivaraman Nair of the Royal Hallamshire Hospital, Sheffield observed that the proportion of published papers describing treatments for HSP was low. I was also uncertain of the prevalence of the differing symptoms and rates of progression for HSP. Therefore, I decided to become more proactive and launch an on-line survey for people with HSP predominantly to answer some of my own HSP questions, but also to share my findings with communities of people with HSP and perhaps to stimulate thought amongst researchers into topics which could be considered for research.
I launched the survey in September 2013 (link). There were 121 respondents who completed the survey, predominantly from the USA and the UK, but also Europe, Canada, Australia, India and South Africa.
An analysis was undertaken between respondent’s mobility levels and the number of other symptoms they have. Those who can walk unaided tend to have 4-5 minor symptoms, up to three moderate symptoms and no major symptoms. All respondents in this group had at least three symptoms, at least two of which were minor. Those who use mobility aids some of the time tend to have 4-5 minor symptoms, up to three moderate symptoms and up to one major symptom. All of the respondents in this group had at least five symptoms, at least one of which was minor. Those who use mobility aids all or most of the time tend to have 2-5 minor symptoms, up to 5 moderate symptoms and up to 5 major symptoms. All of the respondents in this group had at least 7 symptoms.
100 respondents gave details of their diagnosis. 20 respondents indicated that they had been correctly diagnosed with HSP the first time. The most frequent misdiagnoses were; Multiple Sclerosis (MS), Cerebral Palsy, Arthritis and Charcot-Marie-Tooth disease (CMT).
Generally changes in mobility are quite slow, with the majority (three quarters) of respondents having a low change over 5 years. There are a small number of patients, probably less than 5%, who will experience significant changes in mobility over a five year period.
More about the research, including a full analysis of results can be found here.