Following on from the immersive patient experience at the GHRM, where some of you spent just a few minutes experiencing living life with symptoms of spasticity/dystonia*, I wanted to share with you an excellent short film (30 minutes) in which Lily tells us her story in an engaging and powerful way.

Countless visits to doctors, the feeling of “something’s wrong”, being undiagnosed for years – many rare disease patients are familiar with that. This patient journey movie on Dystonia shows the different stations of the disease as it progresses – from first symptoms over diagnosis to treatment – and how it affects a patient’s everyday life as well as ways of coping.

To see subtitles in different languages click on the gear wheel at the right corner on the bottom and choose a language.

The work we do every day supports patients like Lily.

*If you would like to experience some of the symptoms for a few minutes or a few hours – take a tennis ball and place it between your shoulder and your ear, then carry on as normal without dropping it.