Dystonia is a rare neurological movement disorder that causes uncontrolled, constantly repeating muscle contractions. At the most difficult time of my life with dystonia I decided to open an online support group for patients with this disorder. At that time dystonia was causing me to feel very alone and I was looking for someone who would understand me, answer my questions and share experience. Now the group is two years old, has 400 members and works very well.
That’s how my work as a patients advocate started. Today I am a member of the board of the Polish Dystonia Association and a board member of Dystonia Europe – an pan-European umbrella organization for national dystonia associations.
I work with the above organizations to raise awareness about dystonia, stimulate research, influence decision makers, create sources of information about dystonia for patients and their families, and create a communication network.
From my experience of working with people with dystonia, I see that dystonia affects many young people at a time when they are in education and starting their careers. I have learned that young people with neurological disorders still face many barriers in life and are often isolated from society.
EFNA’s Survey of Young Europeans with Neurological Conditions is a great way to find out what problems these young patients face in life with a neurological disorder. From the survey results our organisations can learn what work to focus on in order to improve quality of life for people like me.