Suffer from dystonia? How long did it take for you to get diagnosed?

In 2022, we asked 15 patients from 9 countries in Europe how long did it take for them to get diagnosed.

The diagnosis of dystonia is still an issue!
Urgent attention is needed!

Take part in our awareness campaign and raise awareness!

Help speed up time to diagnosis for future dystonia patients.

All you have to do:

  • Record yourself saying:
    I am … (your name)
    from … (your country)
    it took … (how long did it take for you to get diagnosed)
  • Share the video on your social media profile and add the hashtag: #DystoniaJourney

In our recent work with the dystonia patient journey and also the dystonia survey of Prof Relja in 2019 we have seen that the time of diagnosis can differ from a few months to several years. Very often it depends on where you live and which doctor you come to and if they have any knowledge of dystonia. This is not OK and we want to make a change. More awareness and improved knowledge of dystonia is needed among health care professionals.

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