Geert Mayer, president of the European Narcolepsy Network, writes an exclusive article for iSleep on the events being held under the European Narcolepsy Day, which is being celebrated today:
This year Germany was the host to the European Narcolepsy Day. The EU-NN (http://wp.unil.ch/eunn/) organized this day together with the German Narcolepsy Association (DNG) and Prof. Young and his team from the Department of Sleep and neuromuscular Disorders of the University of Münster.
The organizers could welcome 90 participants from all over Europe. Fifteen National Narcolepsy Associations attended. At this Narcolepsy Day, patients, clinicians and scientists had joined symposia throughout the meeting with patients and physicians chairing the sessions together and discussing important topics such as post swine-flu narcolepsy, driving regulations, coping strategies, learning, quality of life, and access to narcolepsy medications. Only one symposium was strictly dedicated to scientific issues such as genetics and metabolic aspects of narcolepsy.
Khatami from Switzerland started the 6th European Narcolepsy Day with a presentation of the results of the prospective database of the European Narcolepsy Network. With about 1000 datasets this is so far the largest narcolepsy database worldwide. The results shed a new light on narcolepsy: the delay between manifestation and diagnosis presently is 4-5 years (it was up to 16 years in the retrospective database!). In the four year follow-up visits 10% developed all four symptoms of narcolepsy, body mass index increases in about 80%, the number of stimulant intake is decreasing and excessive daytime sleepiness decreases under medication. These data are a hallmark for patients and scientists. They show that narcolepsy is not getting worse over time, but better!
Danjacour from the Netherlands showed the results of her studies on energy expenditure, which does not differ between narcolepsy patients and healthy persons. She also showed data from her sodium oxybate studies saying that this drug increases lipolysis but does not reduce muscle mass.
A hope for the release of new drugs was given by J.C. Schwarz from France introducing two new stimulants, of which the inverse histamine agonist Pitolisant is already available on demand in Europe. This stimulant also reduces cataplexies. The 15 Narcolepsy Associations presented information about free access to narcolepsy medications in their countries. The UK had recently started an important petition on an internet base platform (see http://www.narcolepsy.org.uk).
Patients and scientists presented data on driving issues and problems for narcolepsy patients in Europe, which were discussed controversially. Another major issue was raised about the needs of patients for centers of excellence to establish improved medical diagnosis, treatment and continuous support for patients and families.
A final round with all Narcolepsy Associations about the reimbursement of patients suffering from narcolepsy after H1N1 vaccination marked the end of the European Narcolepsy Day. It closed the gap between patients with sporadic and secondary narcolepsy that was caused by this issue. A consensus was reached which made clear that patients with both forms must stand up together for their rights and needs.
In a summary of this 6th European Narcolepsy Day G. Mayer from Germany called upon each Association to send one member as a representative for a Task Force that will meet regularly to plan actions at the National and European level.
Geert Mayer, President of the EU-NN