Tuesday, 8 October 2019

2019 Survey Open

Hello.

I am pleased to announce that my 2019 survey is now open. As of today (31st October) the questions are in English, German, Italian, Dutch, French, Spanish, Danish and Portuguese. This post will be updated accordingly if I add more languages.

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
Link
Responses (16 Nov)
English: 
133
Français 
42
Nederlands: 
17
Italiano: 
7
Português
5
Español 
5
Dansk: 
1
Deutsch: 
1


2 comments:

  1. I have SPG7 - the medications I take are for bi-polar. I swim, a mile, 3 - 4x per week.

    ReplyDelete
  2. I have SPG7 I take no meds, I do yoga and stretching daily I use a cane outside the home and a mobility scooter

    ReplyDelete