For many years, Nuzhat Bibi, 19, had no idea what was wrong with her. “I would have periodic fits, sometimes three times a month, sometimes more often, when I would first see bright lights and then fall to the ground as a strange smell of burning spread around me. I can never remember what happened. When I woke up I felt totally exhausted. My mother said I had lost control of my limbs and that my eyes rolled up,” she told IRIN.
Nuzhat Bibi had her first seizure when she was 15, following a head injury when she fell from a balcony. She suffered at least 10 similar episodes over the next year, and the local ‘hakim’ (traditional healer) at the village she lives in 30km from Lahore, capital of Punjab Province, suggested she be married, to “cure” her.
The young woman has been fortunate. Her husband, an educated office assistant in Lahore, took her to a doctor. She was diagnosed with epilepsy, and is currently on medication and has not had a seizure for nearly two years.
“I am so happy. The doctor says even pregnancy should not cause problems for me now,” she said. Nuzhat said her husband also realized that even if she had a fit “it is not really such a big deal.”
However, few are as lucky as Nuzhat Bibi. According to one of the limited epidemiological studies carried out into the condition in Pakistan, 9.98 in every 1,000 people have epilepsy - a chronic disorder that involves recurrent seizures, loss of consciousness, motor (muscular) control and often, convulsions.
The UN Population Fund (UNFPA) 2007 report on the state of the world’s population said Pakistan’s population was 164.6 million that year, which means the total number of people with epilepsy is at least about 1.6 million.
“Poorly understood”
The condition is caused by abnormal, excessive electrical discharges in the brain, according to doctors. “It is not an uncommon condition. Epilepsy affects 1 percent of people worldwide,” Nadir Ali Syed, consultant neurologist at the Aga Khan University Hospital in Karachi, told IRIN.
“However it is poorly understood and even educated people sometimes act with extreme insensitivity and even cruelty towards those suffering from it. There are some horrendous stories of how people have been victimized.”
According to Muhammad Abdullah, secretary of the Karachi-based Epilepsy Association of Pakistan, “attitudes regarding the disease are a big problem especially in rural areas.”
Rukhsana Parveen (not her real name) said her sister, aged 14, an epilepsy sufferer, “was beaten up after a seizure by some elders in our village because they said she was ‘possessed’ by an evil spirit”.
Since then the victim, Rubina Parveen (not her real name) has, according to her sister, “become even more fearful than before” and has had to drop out of school. According to a 2007 study, for one in three “young people with mild or severe forms of epilepsy, the main effect was on schooling”.
Part of the social problem surrounding the disease stems from the fact that epilepsy, a neurological disorder, is often confused with mental illness.
“People who are epileptic are brought to my clinic all the time,” said Faisal Sadiq, a psychiatrist in Lahore. He said that in many cases the “stigma attached in our society to mental illness means treatment has not been sought for years and families had sometimes gone to extraordinary lengths to cover up the condition.”
“Too embarrassed to seek help”
“My son is epileptic. Now we know his condition can be controlled, but for years we had been told by relatives that he was ‘retarded’. We were too embarrassed even to seek help,” said Saira Bibi, 30, a domestic worker. Her son, Muhammad Irshad, 10, is now on medication - after her employers insisted she seek medical help - and Saira said: “The doctors believe he may eventually outgrow the sickness.” Irshad is finally going to school.
“Seventy percent of cases can be managed with drugs. About 30 percent cannot be controlled,” said consultant neurologist Syed. Medical advances have, however, meant more and more cases of epilepsy can be effectively treated and the options available to do so have expanded.
Abdullah of the Epilepsy Association of Pakistan said: “Especially outside big cities, people suffering epilepsy rarely get to see a doctor. The disease is still poorly understood in these communities.”
Epilepsy more common in rural areas?
This is despite the findings, from the 2007 study, which showed epilepsy was more common in rural areas. The reasons are unclear but may be linked to socio-economic deprivation. According to the World Health Organization, close to 90 percent of epilepsy cases worldwide are found in developing regions.
As far as knowledge about the disease goes, Abdullah said in urban areas the situation had improved, and the Epilepsy Association regularly “sets up camps and so on to create awareness”.
There is though still a long way to go. It is thought a large number of epilepsy patients in Pakistan and their families still fail to seek treatment, while many remain outcasts who face both cruelty and neglect.
kh/at/cb
Nuzhat Bibi had her first seizure when she was 15, following a head injury when she fell from a balcony. She suffered at least 10 similar episodes over the next year, and the local ‘hakim’ (traditional healer) at the village she lives in 30km from Lahore, capital of Punjab Province, suggested she be married, to “cure” her.
The young woman has been fortunate. Her husband, an educated office assistant in Lahore, took her to a doctor. She was diagnosed with epilepsy, and is currently on medication and has not had a seizure for nearly two years.
“I am so happy. The doctor says even pregnancy should not cause problems for me now,” she said. Nuzhat said her husband also realized that even if she had a fit “it is not really such a big deal.”
However, few are as lucky as Nuzhat Bibi. According to one of the limited epidemiological studies carried out into the condition in Pakistan, 9.98 in every 1,000 people have epilepsy - a chronic disorder that involves recurrent seizures, loss of consciousness, motor (muscular) control and often, convulsions.
The UN Population Fund (UNFPA) 2007 report on the state of the world’s population said Pakistan’s population was 164.6 million that year, which means the total number of people with epilepsy is at least about 1.6 million.
“Poorly understood”
The condition is caused by abnormal, excessive electrical discharges in the brain, according to doctors. “It is not an uncommon condition. Epilepsy affects 1 percent of people worldwide,” Nadir Ali Syed, consultant neurologist at the Aga Khan University Hospital in Karachi, told IRIN.
“However it is poorly understood and even educated people sometimes act with extreme insensitivity and even cruelty towards those suffering from it. There are some horrendous stories of how people have been victimized.”
According to Muhammad Abdullah, secretary of the Karachi-based Epilepsy Association of Pakistan, “attitudes regarding the disease are a big problem especially in rural areas.”
Rukhsana Parveen (not her real name) said her sister, aged 14, an epilepsy sufferer, “was beaten up after a seizure by some elders in our village because they said she was ‘possessed’ by an evil spirit”.
Since then the victim, Rubina Parveen (not her real name) has, according to her sister, “become even more fearful than before” and has had to drop out of school. According to a 2007 study, for one in three “young people with mild or severe forms of epilepsy, the main effect was on schooling”.
Part of the social problem surrounding the disease stems from the fact that epilepsy, a neurological disorder, is often confused with mental illness.
“People who are epileptic are brought to my clinic all the time,” said Faisal Sadiq, a psychiatrist in Lahore. He said that in many cases the “stigma attached in our society to mental illness means treatment has not been sought for years and families had sometimes gone to extraordinary lengths to cover up the condition.”
“Too embarrassed to seek help”
“My son is epileptic. Now we know his condition can be controlled, but for years we had been told by relatives that he was ‘retarded’. We were too embarrassed even to seek help,” said Saira Bibi, 30, a domestic worker. Her son, Muhammad Irshad, 10, is now on medication - after her employers insisted she seek medical help - and Saira said: “The doctors believe he may eventually outgrow the sickness.” Irshad is finally going to school.
“Seventy percent of cases can be managed with drugs. About 30 percent cannot be controlled,” said consultant neurologist Syed. Medical advances have, however, meant more and more cases of epilepsy can be effectively treated and the options available to do so have expanded.
Abdullah of the Epilepsy Association of Pakistan said: “Especially outside big cities, people suffering epilepsy rarely get to see a doctor. The disease is still poorly understood in these communities.”
Epilepsy more common in rural areas?
This is despite the findings, from the 2007 study, which showed epilepsy was more common in rural areas. The reasons are unclear but may be linked to socio-economic deprivation. According to the World Health Organization, close to 90 percent of epilepsy cases worldwide are found in developing regions.
As far as knowledge about the disease goes, Abdullah said in urban areas the situation had improved, and the Epilepsy Association regularly “sets up camps and so on to create awareness”.
There is though still a long way to go. It is thought a large number of epilepsy patients in Pakistan and their families still fail to seek treatment, while many remain outcasts who face both cruelty and neglect.
kh/at/cb
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions
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