A BRIEF HISTORY OF EARLS
At its launch on November 4th, 2009, EARLS had six founding members: Belgium, Finland, Spain, Sweden, The Netherlands and the United Kingdom. Representatives of these countries have been working hard to ensure that EARLS has a serious presence as a European patient organization.
While “Restless Legs” may sound rather harmless in theory, it is far more than just a need to move your legs. In fact, approximately 7% of the world's population suffers from Restless Legs Syndrome (RLS). It generally leads to serious sleep disturbance and as a consequence has a significant impact on relationships, working life, health and general quality of life.
Today there remains little public awareness of RLS. Even patients themselves often do not know that their discomfort is caused by a neurological disorder. There are many cases where patients do not (dare to) mention their symptoms to their doctors. Those who do go and see their physicians often fail to get help: a recent large study conducted in France, Germany, Spain, UK and USA showed that more than three quarters (76%) of all RLS patients were misdiagnosed. Their treatment as a result was often inadequate or even wrong.
In recent years, neurological disorders – in particular those related to the ageing population – have received increased attention among policymakers at both EU and national levels. Notwithstanding these developments, there are major neurological conditions of which political awareness remains very limited and RLS can certainly be counted among these. The EU’s influence on questions pertaining to health is growing. The launch of the European Alliance for Restless Legs Syndrome is therefore a timely and long awaited initiative.
Thephotograph, taken during a planning meeting in July of 2009, shows representatives of the founding countries, an observer participant (Germany), as well as members of the Board of the European Federation of Neurological Associations who have provided assistance in guiding EARLS through its initial stages.
Left to Right: Paul Whitlock (UK), Susan Pihl (Finland), Mary Baker (EFNA), Beverley Finn (UK), Joke Jaarsma (The Netherlands), Esperanza Lopez Maquieira (Spain), Pentti Fri (Finland), Lilo Maier (Germany, auditor), Sten Sevborn (Sweden), Alistair Newton (EFNA), Peter Reijngoud (The Netherlands).