Neurology Central

Global awareness-raising for the underestimated burden of epilepsy

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Each year, World Brain Day (22nd July) will take on a different theme in neurology in order to increase awareness and understanding globally. Wolfgang Grisold, Secretary General and Treasurer of the World Federation of Neurology (WFN), gave us a bit more insight into this year’s focus, epilepsy, and the aims of the day for the WFN.

Epilepsy has been chosen as the focus of World Brain Day 2015, not only because of its prevalence across the world and related misunderstandings of the condition, but also due to the adoption of a new resolution entitled “Global burden of epilepsy and the need for coordinated actions at the country level to address its health, social and public knowledge implications” by the World Health Assembly of the World Health Organization (WHO) earlier this year [1]. The resolution is a call for action from member countries and stakeholders to strengthen their efforts in providing care for people with epilepsy and highlights the need for governments to formulate, strengthen and implement national policies and legislation to promote and protect the rights of people with epilepsy. In low- and middle-income settings, strategies to improve access to, and affordability of, antiepileptic medicines is highlighted as being a priority.

Epilepsy is more than seizures

Epilepsy is characterized by recurrent seizures that occur as a result of brief disturbances in the electrical functions of the brain; primarily excessive electrical discharges in a group of brain cells. The type of seizure depends on which area of the brain is involved. A person having a seizure may experience an alteration in behavior, consciousness, movement, perception and/or sensation. In the majority of cases, the cause for the epileptic seizures is known, including origins such as genetic conditions, abnormalities in brain development, stroke, head injuries and brain trauma, infections, tumor or brain damage during or after birth.

More than 50 million individuals worldwide live with epilepsy and at least half of these could be easily treated with medicines that cost as little as $5 (USD) for 1 year of treatment. Apart from other causes of seizure-related mortality, an estimated 60,000 individuals die every year of sudden unexpected death related to epilepsy [2].

Currently, the burden of illness is unequally distributed. There are twice as many people affected by epilepsy in low-income countries, with many people all over the world having either no access or inadequate access to neurological care. Up to 70% of people with epilepsy can become seizure-free with antiepileptic drug treatment, but the proportion of patients who remain untreated at any given time is more than 75–80% in most low-income countries [3].

Epilepsy is a disease that can have devastating consequences, affecting all aspects of life. Seizures severely affect the quality of life of individuals with epilepsy, often leading to social exclusion and potentially severe depression. Epilepsy patients can be stigmatized and discriminated against in many social activities, in their education and employment. Consequently, individuals sometimes avoid seeking help owing to the fear of repercussions.

World Brain Day coincides with the anniversary of the foundation of the WFN and is being held for the second time this year. In order to raise awareness and discuss both specialist and practical issues surrounding epilepsy, the WFN has partnered with the International League Against Epilepsy, International Bureau for Epilepsy and the WHO, for World Brain Day 2015. The campaign will be played out across social media and in the press, and all WFN member states have been invited to share information on the day as well as to host or organize local events.

The International Bureau for Epilepsy, representing the most influential voice in this setting for people with epilepsy and their families, has developed a strong relationship with the International League Against Epilepsy. By partnering with these groups and WHO, this year’s World Brain Day helps to bring epilepsy to the forefront of public awareness and education, to protect the human rights of individuals with epilepsy, increase investment in epilepsy research and consequently prevent the disease wherever possible.

The WFN World Brain Day initiative is meant as a wake-up call to political decision-makers around the globe. The message we are sending out with World Brain Day in this regard is that political and funding priorities need to shift; governments and international organizations need to prioritize brain health.

To support these activities on-site, WFN is providing promotional and educational materials such as posters, brochures and presentations. An important focus of the campaign in particular is on the use of social media.

The World Federation of Neurology

The World Federation of Neurology (WFN) has 117 members and fosters brain health and neurology worldwide. The federation encourages scientific progress through the work of research groups and by biannual world congresses (http://www.wcn-neurology.com/), supporting and encouraging the development and spread of neurological care worldwide, and providing teaching and educational activities through courses at congresses, global teaching courses, department visits and WFN teaching centers (Rabat and Cairo).The WFN also supports worldwide projects to improve neurological care and education by grants, which are awarded yearly.

The WFN partners and cooperates with many scientific and professional organizations. Among them the IFSMA (International Federation of Medical Students’ Associations), an international student organization helping to promote and introduce neurology in students curricula.

The WFN has a dynamic website, social media, an online journal (http://www.worldneurologyonline.com/) and two journals; the Journal of Neurological Sciences (JNS) and the eNeurologicalSci (eNS), both devoted to foster scientific and clinical development in neurology.

Promotional and material relating to the World Brain Day: www.wfneurology.org/

WFN on Facebook: www.facebook.com/wfneurology?fref=ts

WFN on twitter: @wfneurology

Hashtag: #WorldBrainDay

 

References

  1. Resolution 20. Presented at: Sixty-eighth World Health Assembly. Geneva, Switzerland, 26 May 2015.
  2. Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia. 55(10), 1479 – 1485 (2014).
  3. Kvalsund MP, Birbeck GL. Epilepsy care challenges in developing countries. Curr Opin Neurol. 25, 179–186 (2012).
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