Hello.
I am pleased to announce that my 2019 survey is now open. Questions are available in English, German, Italian, Dutch, French, Spanish, Danish and Portuguese. Click on the relevant link in the table to below to access the questions in that language..
The main focus for this years survey is medication, and I ask for details of up to 5 medications that you take for HSP symptoms. It is possible to comment about other medications for HSP symptoms if you take more than 5. If you do not take any medication, click "next" through until you get to the exercise and relaxation questions.
In addition, I ask questions on lifespace tracking and I seek a couple of perspectives. Similar to recent years the analysis of answers will take into account both mobility and wellbeing. I will collect answers until approximately the end of 2019, with results published on Rare Disease Day 2020 - Saturday 29th February.
Language
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Link
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Responses
(14 Jan)
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English:
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207
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Português
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98
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Français
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47
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Nederlands:
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21
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Italiano:
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8
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Español
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11
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Deutsch:
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2
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Dansk:
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1
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Starting Full Analysis (14 January)
There are almost 400 responses to the survey so far as I start the analysis. First job after translation to English is to eliminate duplicate entries and filter out those who didnt answer any questions to give the sample size for the analysis
Interim Results (3rd December)
I have combined the English and French answers together and undertaken a quick analysis of some results to show a picture of this years results. I'd love more people to answer please!
Out of around 170 people with HSP:
- 85% consider themselves to be disabled
- 50% feel that they are vulnerable
- 30% feel that they are isolated
- 25% have a care plan
About 170 people answered the life-space questions which gives a feel for how much people get out and about.
- More than 90% leave the room they sleep in every day.
- More than 95% go outside more than once a week, with about two thirds going outside daily
- More than 90% go to their neighbourhood at least weekly, with one third doing this daily
- More than 90% go to a nearby town/city/place at least monthly, with half doing this more than once a week
About 140 people answered questions on activities and relaxation.
- Stretches are undertaken by about 95% of people. More than half do this at least daily
- Walking or running is undertaken at least daily by about half of people
- Physiotherapy is undertaken weekly by about a third of people, and less frequently by a quarter
- Cycling, manual wheelchair or swimming are undertaken by more than half of people
- Music is enjoyed by two thirds of people, half of which do this daily.
I have SPG7 - the medications I take are for bi-polar. I swim, a mile, 3 - 4x per week.
ReplyDeleteI have SPG7 I take no meds, I do yoga and stretching daily I use a cane outside the home and a mobility scooter
ReplyDeleteCreo que tengo HPG desde la infancia, (BSCL2, SPG17)con síntomas muy atenuados.De siempre he tenido dolor lumbar y sobre los 40 años caminaba un poco raro sin que esto me impidiese ser militar. A partir de esta fecha se fueron agudizando y en la actualidad (80 años) ya camino con bastante dificultad con bastón. No tomo ningún medicamento para la HSP y mi evolución es muy lenta.
ReplyDeleteNunca noté mejoría con ningún medicamento prescrito para esta enfermedad.
Una encuesta en la que participaron más de 70 afectados de HSP arroja el resultado de que ningún medicamento mejora. Se habla de caminar y la natación, yo tampoco los practico. Hoy desconfío, porque somos pocos quizá no estemos motivados lo suficiente y no hemos sido capaces de conseguir interés de la industria farmacéutica y de los organismos oficiales con competencia para la investigación de alguna solución.