Tuesday, 12 September 2017

2017 Survey Now Open

*** Update - results published 28 Feb 2018: http://hspjourney.blogspot.co.uk/2018/02/2017-survey-results.html ***

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:

  • How HSP affects peoples jobs/occupations
  • Pain
  • Factors that affect walking
  • Wellbeing

There are a range of questions for each topic. I have designed my own questions for occupation and walking factors. Pain is assessed using the Short Form McGill Pain Questionnaire 2, with extra questions on where the pain is felt and how you treat it. Wellbeing is assessed using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) for  assessing positive mental health and the Patient Health Questionnaire (PHQ2) used as a screening tool for depression.

Following the previous pattern, I will collect results until early 2018, then analysing these in time to publish the results here on rare disease day, 28th Feb 2018.

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.

I would appreciate any readers with HSP to complete this survey:

Mid October update: I've just over 100 responses so far. Quick highlights: 

  • 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). 
People are spending ~25mins to complete the survey, and I'd be really pleased for some more responses. Thanks to everyone!

Early December update: I've now got over 150 responses, and am looking into the results in a little more detail. I'm still collecting answers for another month or so, so if you have HSP and a spare half an hour, please take part.

As more complete the survey the proportion considering themselves disabled has gone up. Now 85%.

80% of people with HSP suffer from pain. 50% have mild/discomforting pain whereas 30% have more severe pain.

For people who have walking effects, the biggest factors affecting walking are all types of uneven/sloping/stepped ground, carrying things, needing the toilet or being tired.

85% of people who do not consider themselves disabled are working or studying, whereas for those who consider themselves disabled it is 40% working or studying.

Around 2/3 of people have had to change jobs or stop working early as a result of HSP. A similar proportion expect that they will have to change jobs or stop working early as a result of HSP in the future.


  1. Brilliant - nearly 40 full responses so far. Thanks all. Would love more data from others. People are taking about 25mins to complete this.

  2. Adam, I am filling this out for my husband, Ray White. I contemplated having him fill out his own survey since he has HSP. But, he typically does not discuss his HSP with many people. When he does, his typical reply to everything is I'm fine. If you would still like to hear from him, I would be glad to share the survey with him. We also have a 15 year old son who has HSP and I will forward the survey to him. We are trying to teach him ownership and advocacy.

    1. I'm happy to hear from anyone. I'd be quite interested to see how your perceptions of his pain/wellbeing differ from his own perceptions. Thanks for taking part.

  3. Hello, my name is Mariana and I'm Portuguese.I have been a member of the Herbalife Spastic Paraplegia (HSP) since the age of seven, now 27 years old. would you like to know if there are alternative treatments for this disease? greetings

  4. While undiagnosed, I believe my 17 yr old daughter who has complained about leg pain and standing on her feet for long time periods, as well as always has asked to sit down awhile when walking in the mall from toddlerhood soon will be. Throughout, her doctors were informed about her leg/walking complaints. After a myriad of continuous illnesses since, along with numerous health related conditions, increasingly odd behaviors and socialization issues, a genetic blood test has revealed a 15q11.2 deletion also about the same time last year that extreme fatique, leg pain and lower body weakness started progressing. Then, six months later daughter asked for a cane to get through her school day. Initially, doctors indicated symptoms could be functional due to her history of extreme anxiety. While waiting on MRI scheduling, I have researched so did discover that the 15q11.2 deletion is linked with HSP (SPG 6) teenage onset which doctors did not mention, however, I am very concerned. Daughter who experiences considerable pain did have limited physical therapy during which her source of pain could not be determined as either neurological or orthopedic. Just this past month, daughter as an early graduate completed high school but is unable to work or enroll yet in community college admitting since symptoms began she is about 50% disabled. I will not complete your survey given daughter has not been diagnosed with HSP but her history may provide useful information.