I am pleased to announce that my 2022 survey is now open.
This is my 10th survey. I am analysing changes in mobility aid use for anyone who has completed any of my previous surveys. If you have completed any of my previous surveys I ask that you please take some time to answer these questions.
The questions are available in English, Dutch, Italian, French, Spanish, German and Portuguese. These languages are the same as last year. Click on the relevant link in the table to below to access the questions in that language.
The focus for this years survey is:- Mobility
- Pain
- Disclosure
- Life with HSP
- Menstrual health
As previously my analysis of answers will take into account both mobility and wellbeing. I will collect answers until approximately the end of 2022, with results published on Rare Disease Day 2023 - Tuesday 28th February. Also, as before only "name" and "country" are required questions. Answer all others that you want.
If you are using your phone to complete this survey I suggest you rotate your screen to landscape to make answering the questions easier.
Language | Link to access survey: | Responses 30 Dec |
English | 263 | |
Dutch | 51 | |
French | 61 | |
German | 35 | |
Italian | 15 | |
Portuguese | 63 | |
Spanish | 42 |
2nd December update
A brief analysis of the English results (as this is the biggest dataset so far) shows the following points:
- Roughly 90% of people consider themselves to be disabled.
- Most people have or would disclose their HSP to others
- Between a quarter and half of people experience more pain, spasticity, fatigue or worse mental health during their menstrual cycle.
- About three quarters of people get pain from their HSP, with the most common descriptors being cramping pain, aching pain or tiring/exhausting pain. Pain is most intensely felt in the hips, legs, feet or back.
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