The European Headache Federation (EHF) and European Headache Alliance (EHA) held a joint event hosted by Nessa Childers, MEP in the Member’s Salon of the European Parliament on Wednesday 24th February, to raise awareness of cluster headache. The event announced the launch of the first ever Cluster Headache Day on the Spring Equinox, 21st March.
Cluster headache affects up to 4 in 1,000 people. Despite being relatively unknown, it is one of the worst pains known to man and unlike migraine it mainly affects men. The word ‘cluster’ refers to a period of time lasting weeks or months, with an increased number of headache attacks associated with seasonal changes and light hours in the day, peaking at the equinox.
The well-attended event moderated by Dimos Mitsikostas, President of EHF and Audrey Craven, President of EHA, attracted patients, physicians, industry and Members of the European Parliament. Host, Irish MEP, Nessa Childers welcomed everyone commenting on the importance of stakeholders coming together to speak with one voice to policy makers. She was struck by the fact that cluster headache whilst considered relatively rare is as prevalent as multiple sclerosis and Parkinson’s disease.
Prof. Paolo Martelletti, Vice President of EHF said cluster headache is an abandoned brain disorder due to a lack of medical knowledge. He stated that 70% of diagnosed patients are not adequately treated and 10% becoming chronic.
Prof. David Vodusek of the European Academy of Neurology (EAN) explained the role of EAN as the one and only European Society for the study of Neurology, commenting on the need to educate both the public and doctors to raise awareness of cluster headache. EAN organises teaching courses and symposia at congresses to educate the medical profession on neurological disorders. EAN works hard to ensure there is a patient representative serving on each relevant scientific committee e.g.Headache Panel. Patient input is vital when it comes to tackling these important initiatives together.
Steve Verbruggen gave a moving personal testimony outlining the impact of up to 700 attacks per year on his personal life and career. He described how his attacks worsened over the years leading him to seek several medical opinions and trying various treatment strategies. Despite finding cluster headache extremely difficult to deal with due to the heavy personal burden and impact on his family and work life, Steve has an inspiring outlook and stressed the importance of finding a good prophylactic treatment in the future to reduce his number of attacks.
Prof. Dimos Mitsikostas, President of EHF, stated that more than 600,000 people in Europe live with cluster headache, with less than 50% seeing a specialist and more than a third of sufferers missing work at a cost of 7 billion euro per year. Despite Cluster Headache being one of the most painful disorders known to man, it receives relatively little funding for research. Just 2 million euro has been spent in one decade compared to 1827 billion euro spent on Multiple Sclerosis in 25 years.
Prof Mitsikostas explained that the 21st March had been selected to highlight Cluster Headache to reflect the increase in cluster attacks at the time of the equinox.
Audrey Craven, President of EHA explained that the activities of cluster headache day would include both online and offline activities as part of EHA’s ‘What’s Under the Hat?’ public awareness campaign. She hoped that the launch of Cluster Headache day would lead to increased public recognition of the disorder and the importance of self-management. She reflected on the importance of keeping people in employment as part of their self-management and healing and how MEPs have a key role in ensuring policy decisions reflect this.
‘Cluster Headache – One of the worst pains known to man!’
Chairs: Prof. Dimos Mitsikostas, Greece, President, European Headache Federation /
Audrey Craven, Ireland President European Headache Alliance.
Nessa Childers, MEP, Ireland
- Cluster headache – a medical expert’s perspective
Prof. Paolo Martelletti, Italy
- Cluster headache – a patient expert’s view
Steve Verbruggen, Belgium
- European Academy of Neurology
Prof. David Vodušek, Slovenia
- Cluster Headache Day announcement and campaign – 21st March
Prof. Dimos Mitsikostas, Greece / Audrey Craven, Ireland