A journey to HSP/FSP: 2018 Survey Open

After the success of my previous surveys, and feedback from readers and others, I'm continuing the pattern with another survey this year.

My focus for this survey is understanding:

HSP Symptoms
Sleep
Activities of Daily Living
Support group membership and Progress tracking
Misdiagnosis

There are a range of questions for each topic. I have designed my own questions for symptoms, support group membership and misdiagnosis. Sleep is assessed using the Global Sleep Assessment Questionnaire (with a couple of additional questions added). Activities of Daily Living are assessed using the Katz index.

Last year I had good opportunity to explore which HSP factors affected Wellbeing, and these questions are repeated from last year, using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) for assessing positive mental health.

The list of HSP symptoms is expanded from my first survey in 2013, and I will examine change in symptoms between 2013 and now, where I have data. I will also examine change in mobility over the period I have been running surveys for those who have completed more than one survey.

Following the previous pattern, I will collect results until early 2019, then analyse these to publish the results here on rare disease day, 28th Feb 2019.

Also like before, all questions are optional (apart from your name and country). If you have taken part in any of my surveys before, I'd appreciate you using the same name to allow tracking.

Therefore, I would appreciate any readers with HSP to complete this years survey:
https://www.surveymonkey.co.uk/r/HSP2018AL

If you dont speak English then the following links will take you to a PDF which has the questions in English and other languages to help you answer. I will use Google translate to get your answers back to English for the analysis
https://drive.google.com/open?id=1yQhHgn-Q8hXxhwJrx19av6cWO1olG1tP (French)
https://drive.google.com/open?id=1MLAIichys6Xc3ueGJ9VGwcdkfOzjWs7U (Portuguese)

** 27th November Update **

Hi. I’m collecting answers to my HSP survey for about another month. I’ve over 200 responses so far. This is an initial look at two questions.

For symptoms, fatigue is one symptom which about one third of people feel affects them the most. Others are:

Fatigue	34%
Mobility	27%
Stiffness/weakness	19%
Balance	17%
Pain	17%
Bladder/Bowel issues	15%
Sexual function	6%
Cognitive issues	6%

Looking at sleep – over half of people usually or always have difficulty falling asleep, staying asleep, or feeling poorly rested in the morning. The biggest factor is needing the toilet where nearly half of people are affected by this usually or always. Other factors are:

Need the toilet	44%
Repeated jerks or twitches	30%
Feeling restless	27%
Disturbed by pain	27%

Over a quarter fall asleep unintentionally or have to fight to stay awake, and over a quarter have sleepiness interfering with daytime activities.

I’m very pleased to see answers other than in English, it is expanding my audience. I would be pleased to see more data, so if you have a spare 20 minutes, please give your answers.

** 5th October Update **

I have over 150 responses so far, the most ever at this time! Thanks to everyone who has completed so far. People are taking about 20 minutes to complete this survey.

Initial headlines:

· About 80% of people regard themselves as disabled.

· About a third of people were mis-diagnosed prior to their HSP diagnosis.

· About a third of people have another long term health condition alongside their HSP

· About 60% of people are a member of a support group

· Symptoms affecting the most people:

o Difficulty running/walking – 90%

o Difficulty with stairs and/or balance – 85%

o Feeling more stiff when cold and/or fatigue – 80%

o Pain in lower body, bladder problems, stress, clonus – 60%

· There is a big overlap in muscles feeling stiff and muscles feeling weak, each around 85%

I’d be really pleased to hear from more, so if you have HSP and a spare 20 minutes, please take part. If you dont speak English there are translation sheets for the questions into French, Portuguese, Italian, Dutch, Spanish, Swedish, Danish, German, Japanese, Greek and Norwegian.

A journey to HSP/FSP

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Tuesday 11 September 2018

2018 Survey Open

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