Stronger together at Dystonia Europe’s D-Days

22 June 2018

​​Celebrating its 25-year existence, Dystonia Europe organized D-Days in Brussels on April 12 - 14. The three-day event united patients living with dystonia – a rare neurological disease affecting about 10,000 Belgians – with doctors, researchers and policymakers.

The brains of people with dystonia send the wrong instructions to their muscles. Those muscles then contract, leading to abnormal movements. The disease’s manifestations are diverse, ranging from writer’s cramp, in which patients are unable to hold a pen, to uncontrolled full-body contractions. This makes it a difficult disease for doctors to recognize. Dystonia usually stabilizes after five years, but rarely ever improves or goes away completely.

Patients, clinicians and scientists explained their needs at the European parliament
At a lunch in the European Parliament preceding the conference, prof. Maja Relja (Zagreb University) presented the first results from a survey assessing the challenges dystonia patients face in Europe. This showed that many still face barriers to access healthcare, including long delays to diagnosis. Several members of the European Parliament heard Professor Relja emphasize “that this was still occurring in Europe, not a third world country”. The politicians were also confronted with the compelling testimony of Adam Kalinowski (Poland) explaining his personal struggles being diagnosed and not receiving care at the frequency needed to retain employment.

Rose Goodchild (VIB- KU Leuven Center for Brain & Disease Research) explained the case for more basic research on the disease, as this is the only way to develop new cures. Heather Clarke, an EU policy advisor, immediately reacted to these messages and expressed her hope that they bring about change in the future: “I would like to see an EU in which national and European policymakers, patient organizations, scientists and healthcare professionals collaborate to deliver health to each and every citizen.”

D-Days: where patients, doctors and scientists meet
Monika Benson, executive director of Dystonia Europe also emphasized the importance of uniting the perspectives of doctors, patients and scientists: “It’s only by bringing together the different people involved that we can exchange ideas and experiences to eliminate treatment gaps and promote research. ”Rose Goodchild confirmed this and even added that molecular research on dystonia should look outside to other diseases. Rose: “It makes little conceptual sense for molecular brain researchers to subdivide ourselves into whether we work on infant-onset disease, mid-life diseases (like most dystonia) or late-life neurological disease; we are all ultimately asking how neurons function and become dysfunctional.”

Dr. Bruno Bergmans (UZ St Jan, Brugge and former VIB scientist in the VIB-KU Leuven Center for Brain & Disease Research), a neurologist specialized in movement disorders, shed light on the causes of the disease. “What strikes me most are the rapidly advancing insights in genetics, which help us better to understand dystonia. The research conducted in the Rose Goodchild lab is top class and we should be proud to have such great scientists in our country. We can only hope that their work will eventually lead to improved treatments.”

An energy boost for patients and scientists
Martine De Wilde, a patient and one of the 100 attendees, called the event ‘unforgettable’. “I’ve learned so much about the illness and its treatments. We really need these kinds of events to spread knowledge about dystonia. Highly recommended!” Another patient, Goele Peters, couldn’t hide her enthusiasm either: “It was impressive to see all those patients in one room. Very interesting conference, worth every penny.” The VIB team attending the event also found it inspiring: “Events like D-days are of great importance, as they create opportunities for us to connect with patients and hear first-hand what our day-to-day work really means to people.”