Breaking the Stigma of Epilepsy

It was almost five o'clock in the morning. Ahmad Sururi, a student at the Vocational School of Pharmacy, woke up and rushed to ablution. The prayer mat was spread out, and he began to pray. When he prostrated, then rose for the second rakat, his eyes widened. His body suddenly felt light, and in seconds, he lost consciousness. Ahmad fell down and fainted for a few minutes. Once he woke up, he stood up and got ready for school, completely forgetting that he was in the middle of praying.

At school, Ahmad had many activities which often made him exhausted. His mind was drained, and he fainted several times. Typical fatigue, Ahmad thought. However, his condition worsened over time and it interfered with his activities. He finally went to the hospital, and the doctor diagnosed him with epilepsy symptoms.

Knowing Ahmad had epilepsy, his family became protective and forbade him from participating in many activities. Friends began to rarely invite him to activities. Upset by the different treatment, Ahmad was determined to prove that people with epilepsy could undertake normal activities.

After finishing his vocational school in 2006, Ahmad won a scholarship to study at Bogor Agricultural University. Consistently obtaining a GPA above 3.5, he was allowed to shorten his study period. After graduating, he worked in an oil palm plantation in Central Kalimantan until now. To prevent epileptic seizures, he diligently takes anti-epileptic drugs such as folic acid and carbamazepine.

Ahmad Sururi's story is revealed in Out of Shadow, published by Yayasan Epilepsi Indonesia (Indonesian Epilepsy Foundation or YEI) in 2013. This book is an anthology of stories written by people with epilepsy living their lives. They come from diverse backgrounds; some are holders of master's degrees, bachelor's degrees, and some are still students.

"The goal is to give people an understanding of epilepsy and hope for other people with epilepsy to remain optimistic," said Irawaty Hawari, a neurologist and chairman of YEI, to Historia.

According to Irawaty, many people still have misconceptions about epilepsy. "If asked what epilepsy is, people will answer, 'oh, it's the disease with convulsions, isn't it? Like a possessed person?' But epileptic seizures are not just that," said Irawaty. Once, she found a person with epilepsy was admitted to a mental hospital. "Putting a person with epilepsy in a mental hospital was wrong. Epilepsy is not a mental disorder, but a disorder of the brain's nervous system."

Resembling a Wild Boar

Misconceptions about epilepsy have a long history. The Waharu inscription, dating from the 9th century, mentions epilepsy as one of the curse diseases for criminals. This also comes in line with the general view in Europe.

Our ancestors in Nusantara had passed on this perspective for hundreds of years. As a treatment, they used to recite mantras and rub the epileptic's head and then beg the Almighty to lift the curse. Another method was to shackle them. They considered the behavior of epileptics dangerous, "where the patient showed a violent tendency to jump into the water in addition to certain symptoms resembling 'wild boar movements'," wrote Snouck Hurgronje in Aceh di Mata Kolonialis (Aceh in the Eyes of the Colonialists).

Snouck studied the people and customs of Aceh during 1891-1905. One of his subjects was diseases in Aceh, including epilepsy. According to Snouck, because people with epilepsy often acted like pigs, the Acehnese named the disease pig madness.

In Aceh, epilepsy also has another name, saket droe. "Usually, people contract it in the evening or midnight. They fall unconscious, their body is tense, stiff, and their mouth is closed," wrote Moehammad Hoesin in Adat Atjeh (Aceh Custom).

Acehnese people believe this disease comes from the "buru ghost", a type of jinn in the jungle. Droe attacks adults, children, and babies. To get rid of it, the Acehnese wipe the forehead and chin of the person with epilepsy with inggu (a medicinal plant) while reciting verses of the Qur'an.

In Pasundan, people call epilepsy sawan. Children and infants are susceptible to this disease. "The eyes of children who get sawan will widen with no certain cause," wrote A. Prawirasuganda in "The Customs of Conceiving, Maternity and Circumcision in the Land of Pasundan", published in Tijdschrift voor Indische taal-, land-, en volkenlunde 1952-1957, Volume 85.

The Dutch East Indies lagged behind in terms of medical knowledge of epilepsy. Neurologists rarely discussed about it. The periodical for medical science in the Dutch East Indies, Geneeskundig Tijdschrift voor Nederlansch-Indië, only published a special report by doctor C.L. Bense on epilepsy entitled "Jacksonische Epilepsie een Gevolg van Secundaire Syphilis" (Jacksonian Epilepsy as a result of secondary syphilis) in 1893, even though the magazine started publishing in 1852.

Epilepsy Studies in Indonesia

Slamet Iman Santoso was once a victim of people's ignorance about epilepsy. While attending bewaarschool, a school between kindergarten and elementary school, in Magelang in 1912, he sat next to a friend. One day, his friend suddenly fell down while they were studying in class.

Without hesitation, the teacher punished Slamet, thinking that Slamet had done something to his friend. It happened three times. Slamet finally had enough and asked to change seats. His friend sat alone, but he still fell to the ground.

Growing up, Slamet studied neurology at the Geneeskundige Hoogeschool (Medical College) in Batavia. His subjects included epilepsy. "Now I know that my classmate suffers from epilepsy," said Slamet in Warna-Warni Pengalaman Hidup.

Realizing that many people still didn’t know much about epilepsy, Slamet was intrigued. He opened and headed the Department of Psychiatry and Neurology at the Faculty of Medicine, University of Indonesia (FKUI) in 1950. He also sent young people to the United States and the Netherlands so that they could study neurology, hoping that someone would eventually study epilepsy medically. Mahar Mardjono was one of those people.

He was a freshman at the Faculty of Medicine in 1950 and was originally interested in anatomy. However, he met Slamet, who told Mahar that he wanted to establish an epilepsy center. Mahar knew it wouldn't be easy, because epileptologists were rare in Indonesia. Mahar was challenged. He agreed to study epilepsy, even going to the United States in 1956.

"I specifically deepened my knowledge in the field of epilepsy both regarding aspects of neurophysiology and pathology as well as clinical aspects," Mahar wrote in Kiprah Dokter dalam Era 50 Tahun Indonesia Merdeka (Doctor's Work in the 50 Years of Independent Indonesia).

Returning to Indonesia in 1958, Mahar immediately applied his knowledge. He brought in equipment for the study and therapy of epilepsy at FKUI. He was determined to realize Slamet's idea of an epilepsy center.

Removing Stigma

According to Mahar, epilepsy patients in Indonesia are quite numerous. In Jakarta alone, in 1958-1961, there were 412 epilepsy patients who sought treatment at the Neurology Department of FKUI and the Central General Hospital in Jakarta. These numbers can still be inflated.

"It is generally considered that people with epilepsy will suffer from this disease for life," Mahar wrote in "Epilepsy: Some Clinical Aspects of Epilepsy Problems with Special Attention to Temporal Lobe Epilepsy", a dissertation at the University of Indonesia in 1963. This assumption makes people with epilepsy negligent to see a doctor, although efforts to spread knowledge about epilepsy have started since Mahar's return.

Doctors F.K.E. Kluge, Lie Han Giauw, and The Sie Tiat wrote in the April-December 1963 edition of Berita Departemen Kesehatan Republik Indonesia (News of the Ministry of Health of the Republic of Indonesia) that epilepsy is not a lifelong disease. They also described what epilepsy is and how to treat it with luminal drugs and psycho-social therapy. However, not everyone read the publication.

Consequently, Mahar increasingly saw the importance of an epilepsy center. "It is very necessary, from the point of view of humanity and national interest, to have an epilepsy center. In such a center, epileptics can be examined and treated scientifically," wrote Mahar.  

Mahar's efforts paid off in 1964. "The center was established by the staff of the Neurology section of the Faculty of Medicine, University of Indonesia in Jakarta at Cipto Mangunkusumo Hospital," wrote Djaja, November 6, 1965.

The epilepsy center provides a special polyclinic for epileptics, serves electroencephalography examinations, studies unique epilepsy findings, and holds lectures from epilepsy experts for social agencies, judges, police, doctors, and scholars.

But Mahar wasn't satisfied yet. He still received reports of people with epilepsy being confined by their families. Some people still thought that children with epilepsy are stupid and contagious. The reports usually came from the suburbs, so Mahar thought there needed to be an extension organization in the suburbs. Together with his friends, he founded Perhimpunan Penanggulangan Epilepsi Indonesia (the Indonesian Epilepsy Management Association or Perpei) in 1982.  

"We tried to remove the negative stigma on epilepsy sufferers in the suburbs. The stigma is huge, and it affects the sufferers," said Mieke Saleh Sastra, one of the founders of Perpei.  

Unlike epilepsy centers, Perpei was established in each region and focused on providing information about epilepsy. One of Perpei's most prominent efforts was seen in 1991.

"Central Perpei together with Ciba Geigy, a pharmaceutical company for epilepsy drugs, designed a national public service advertisement about epilepsy, both for television and print media," said Mieke.

On television, the ad featured a boy with epilepsy, named Adi, playing soccer. His friends treat him equitably. "Adi, let's play soccer again!" a friend called him. The message of the ad is clear and straightforward, showing that people with epilepsy can live a normal life and people should accept them for who they are.  

"The ad was quite powerful. It stuck to the people," said Irawaty Hawari. But Irawaty realizes that the negative stigma of epilepsy is yet to be completely erased.  

Information about epilepsy is now abundant, but the challenges of overcoming epilepsy are increasing. Affordable epilepsy drugs are often missing from the market. The government is rarely involved in treating epilepsy. Meanwhile, the epilepsy center started by Mahar and his friends is slacking off. After all, the effort to overcome epilepsy is still not over.