The work on the project Cervical Dystonia Patient Journey continues. It all started four years ago when we developed a patient journey/patient experience map for people living with cervical dystonia in Europe.
It is being translated into other languages and these are all available on the ERN-RND website.
https://www.ern-rnd.eu/disease-knowledge-hub/dystonia/
There you find the cervical dystonia patient journey in: English, Czech, Dutch, Finnish, French, German, Hungarian, Italian, Norwegian, Polish, Portuguese and Spanish. The goal is to have it translated to most European languages.
Last year at the EAN Congress in Budapest an actress performed the Cervical Dystonia Patient Journey in the Scientific Theatre. The ERN-RND team thought this was so good that they decided to record it in a more professional way.
At our annual meeting in Timisoara, we were delighted to show for the very first time “Lilly’s Journey” – a 25-minute long video with actress Carmel Stephens from Ireland.
She is doing a wonderful interpretation of the many stages of the patient journey such as: what it is like to discover the first strange symptoms of dystonia, the struggle to find out what it is, the search for the best treatment and how to learn to live with it.
You find the video here:
https://www.youtube.com/watch?v=PxJmQA1ewi0
We hope this video will help to raise awareness and spread knowledge about dystonia.
Monika Benson, Executive Director, Dystonia Europe
