International League Against Epilepsy

The International League Against Epilepsy (ILAE) is a voluntary international organisation for physicians working in the field of epilepsy. It is committed to ensuring that health professionals, patients and their care providers, governments, and the public world-wide have access to the educational and research resources that are essential in understanding, diagnosing and treating people with epilepsy.

Athlete Usain Bolt and friends take part in the Stand Up for Epilepsy campaign. Image credit: ILAE.

The ILAE archive was deposited with the Wellcome Library in 2013. It is now catalogued and available for research under the reference SA/ILE.

Epilepsy is a chronic non-communicable neurological disorder of the brain, which affects roughly 7 in 1000 people and occurs all over the world and regardless of age, income or social status. Historical figures that are said to have had epilepsy include the Roman Emperor Julius Caesar and the writer Fyodor Dostoevsky.

Symptoms occur at unpredictable moments and can range from brief lapses of consciousness to full body convulsions that cause the patient to lose consciousness. If properly treated 70-80% of people can have their symptoms controlled. Epilepsy is a condition that carries a stigma, particularly in some developing countries where treatments are not readily available. From earliest recorded history its symptoms have been described as having an extra-terrestrial, divine or mental origin, or being associated with myth and superstition. It has serious physical, psychological and social consequences if it is not treated and understood.

St. Nilus healing a ‘possessed’ boy with epilepsy by anointing him with lamp oil. From a painting in the church at Grottaferrata. Engraving by Oskar Rosenthal, published Leipzig, 1925. Wellcome Images reference no. L0005933.

Much of the work of the ILAE since its foundation in 1909 has been to dispel such myths, whether by communicating advances in medical knowledge of epilepsy within the neurology and epileptology professions or by educating the wider medical profession as to the true scientific and neurological nature of the condition.

As a scientific medical organisation its two main forms of communication are its academic journal Epilepsia (founded 1909) and its international conference programmes, which ran from 1909. The journals (which are not included in this collection) are available online.

They document one century’s worth of knowledge and information on the treatments available for epilepsy, evolving scientific discovery, attitudes to epilepsy both in the medical profession and wider world, and the social aspects of the condition. The early papers of the ILAE are missing but much of the early history of the organisation is recorded in Epilepsia.

The papers in the collection predominantly date from the 1960s to the 1990s. Scientific advances from this period are recorded in the papers of the International Congress organising committees (SA/ILE/K), in the papers of the Workshop organisers (SA/ILE/L) and of the subject specialist commissions (SA/ILE/H). These workshops and commissions were tasked with coordinating and disseminating the latest research on topics such as antiepileptic drugs, neurobiology, genetics, and the effect of tropical diseases on epilepsy. There are also large numbers of files relating to the classifications of epilepsy and the contribution of this research to the International Classification of Disease produced by the World Health Organisation, editions ICD-9 and ICD-10, in SA/ILE/J/1/4. Many of the files in the archives relate to the governance and management of the ILAE from the 1960s to the late 1990s.

The ILAE / IBE / WHO Out of the Shadows campaign from the cover of the 2001 campaign Annual Report. Wellcome Library reference: SA/ILE/B/4/4/1/2.

One of the most recent achievements for the ILAE was its partnership with the World Health Organisation (WHO) and the patients’ organisation, the International Bureau for Epilepsy (IBE), to initiate a Global Campaign Against Epilepsy. It had an ambitious goal to improve health care services, treatment, prevention and social acceptance of epilepsy worldwide. It worked with each participating country’s health system to achieve this, to ensure the sustained availability of essential antiepileptic drugs and to embed the programme. The plans also included the training of local health professionals and the promotion of a positive attitude to epilepsy within communities. For papers relating to this campaign see SA/ILE/B/4/4/1.

Author: Nicola Waddington worked as an Archives Consultant for the Wellcome Library.