First International Epilepsy day 9.2.2015.

1st International Epilepsy day 9.2.2015.

VALNTINE AND EPILEPSY

Dr.M.A.Aleem M.D.D.M. (Neuro) Former of Vice Principal HOD & Professor of Neurology KAPV Government Medical College & MGM Government Hospital Consultant neurologist and Epileptologist (Trained at Institution of Neurology Queen,s Square. London.UK.) ABC Hospital, Trichy - 620018 President Trichy Neuro Association drmaaleem@hotmail.comCell.94431-59940

Huge efforts have developed over the past decade in different parts of the world to bring awareness about epilepsy to the public domain. Epilepsy still remains the “black sheep” among neurologic diseases. Even in the modern context, people in many parts of the world continue to perpetuate many myths and misconceptions about epilepsy. This may be due in part to the ancient nature of epilepsy, with the association of being possessed by imagined demons and spirits. This leads to persistent restrictions in different cultures that stigmatize people with epilepsy over many generations. These often prevent people with epilepsy from seeking proper medical treatment.

However, an important way to bring epilepsy out of the shadows and educate the public about modern concepts that epilepsy is a disease like any other is through awareness. This means taking the opportunity to showcase that people with epilepsy are not much different than anybody else. In fact, most people with epilepsy are successfully treated so that they can lead essentially near normal lives, get married, have children, and participate in modern social and family life.

As a neurologist and as a professor of neurology dealing with rural patients with epilepsy in India, it was Dr.M.A.Aleem who mooted the idea in 2003 for a world Epilepsy Day (WED) for epilepsy.Last year Dr.M.A.Aleem worte to the International League Against Epilepsy (ILAE) which not only published the request in Epilepsia but it was also favorably considered by ILAE and International Bureau for Epilepsy[IBE] .
To overcome this problem, three leading international organizations working in epilepsy – World Health Organization (WHO), International League Against Epilepsy (ILAE), and International Bureau for Epilepsy (IBE) – launched the “Global campaign Against Epilepsy (GCAE)” in 1997 to bring epilepsy, epilepsy patients, their family, and community “out of the shadow.” There are already examples of epilepsy awareness days in different parts of the world. For example, in India our epilepsy day has been observed on November 17 every year. As Dr.Aleem mentions, since June 29, 1997 the three – way partnership of the ILAE, the IBE, and World Health Organization (WHO) has been involved in the high profile ILAE/IBE/WHO Global Campaign against Epilepsy “Out of the Shadows” initiative.

More recently, in February 2011, European Epilepsy day was introduced, and this has been very successfully celebrated each year since then, by both IBE and ILAE, with activities in the European Parliament in Brussels and Strasbourg, by IBE member associations and ILAE chapters, and by epilepsy centers, schools, and groups across Europe. It has also been a long – held desire of both IBE and ILAM to establish an international day for such an event have proved to be difficult for a number of reasons. For instance, unfortunately, with a decision made by WHO a few years ago not to introduce any further World Health days this was no longer an option. Was the second problem, which proved to be the biggest obstacle, was the selection of a suitable, globally agreeable date. For instance governments to the need for improved services and legislation, the event should take place when parliaments are in session, and the need was felt to avoid overlap with other major world days in order to maximized exposure.

The decision was made therefore to reopen discussion, following which a different date was identified and approved by a majority vote of both IBE and ILAE committees. This new date is the second Monday in February and is suitable for a number of reasons including that it does not clash with festivals and religious events and is neither mid – winter nor mid – summer. The date lies closed to the celebration of Valentine’s Day, a day that is celebrated around the world. It is a commonly held belief that Valentine had epilepsy.
Now that a date has finally been decided and rubberstamped, it is but expected that international Epilepsy Day will grow to be an important annual event to raise the profile of epilepsy around the world. Between now and the February 9, 2015, ILAE and IBE will be working on plans for the launch of the 1st International Epilepsy Day. With both organizations in official working relations with WHO, and with IBE, having Special Consultative Status on the Economic and Social Council of the United Nations (ECOSOC), our organizations can bring a high level of distinction and prestige to the celebration of an international day for epilepsy when we will highlight at international, regional, and national levels, the huge problem still faced by the estimated 60 million people living with epilepsy today worldwide.

By proclaiming a world Epilepsy Day (February 9) it is also useful to plan action regarding the incidence, prevalence, economic burden, treatment gap, and above all the stigma of epilepsy in all parts of the world. For instance, each year we can adopt a central theme for the world epilepsy day. This can include topics like epilepsy and women, epilepsy in elderly, epilepsy in transgender, epilepsy in children, and epilepsy in adolescents. We trust that all interested stakeholders will join with us in the launch and celebration of International Epilepsy Day (Feb 9) in 2015. Together we can make a difference.