‘Impact of epilepsy on patients goes beyond injuries’

At least two million Pakistanis suffer from epilepsy which is one of the most common chronic neurological disorders and requires prolonged treatment and drug usage.

This was stated by neurologist Dr Fowzia Siddiqui, president of the Epilepsy Foundation Pakistan, while addressing a seminar on 'Epilepsy: Beyond Seizures', held earlier this week to mark International Epilepsy Day.

She said epilepsy was widely misunderstood and carried a vicious stigma. “Epilepsy comprises a vast group of disorders and syndromes with one common symptom: seizures.” She said it was a clinical manifestation of abnormal electrical discharges within the brain. “The seizure may be simple partial or complex partial (collectively called focal) or generalised. It can present from simple staring spells to full blown convulsions that can occur at any time, resulting in embarrassing situations and traumatising experiences.”

Dr Fowzia said estimated two million people in Pakistan were suffering from epilepsy. “The impact of epilepsy upon those who suffer from this disorder extends far beyond the injury that seizures themselves can cause. The unpredictability of seizures imposes severe restrictions on lifestyle and can inhibit patients’ social interactions,” said the expert.

She said given the high direct and indirect costs of epilepsy, the treatment caused a significant financial burden on the caretaker. “The lack of awareness in our society regarding epilepsy probably has a greater impact on patients than the seizures. The concept of being demonically possessed remains quite prevalent here as does the thinking that epilepsy is a mental illness or some contagious plague. Such issues drive the patients into social isolation, resulting in severe psycho-social implications.”

Giving an example, she said the confused behaviour typical of temporal lobe and complex partial seizures can be disturbing and appear as if in a trance. “This can seem weird and scary to someone who is unaware. Having a convulsion in the work place can be frightening to coworkers and likewise can lead to job dismissals.”

Dr Fowzia said women are divorced, marriage proposals declined, leading to either deceit in the union or depression, both creating a further burden on society. “Epilepsy can thus adversely affect the quality of life of many who suffer from this disorder. Epileptics feel the disease restricts liberty and making earning a living difficult.”

She said epilepsy was treatable and patients could lead a normal life. “Some are even of super normal intelligence. While an epileptic may never be allowed to fly an airplane, or be a commercial driver there are a lot of things that they can do, and should be allowed to do. For example completing school, following their dreams, from physicians to musicians, explorers to inventors all are possible.”

She said for older patients the need to encourage art, handicraft, technical support should be emphasised. “They should be encouraged to participate in all activities and pursue whatever reasonable career they wish.”

To achieve this, she said: “We need to provide proper education and support groups; ensure tolerable workplaces and jobs without discrimination, reinforce public awareness and abolish the stigma.”

She asked for a subsidised medication plans for epileptics to ensure compliance. Dr Fowzia said: “If we could help create awareness to the outskirts of Pakistan we would have made a difference.”

Noted neurologist and professor at the Baqai University, Prof Dr Arif Heerikar, said epilepsy was a curable disease. He said it was necessary to raise awareness among the Pakistani society, so the people could know about the fits and seizures. “It is necessary to take care of such patients so that they could be saved from falling and injury.”

Neurologist Dr Muhammed Hassan said costly drugs and lab tests were the main hindrance in proper treatment of this disease. “The misconceptions and stigma attached to this disease should be removed.” He demanded of the authorities to ensure subsidy for medicines of this disease. He requested the print and electronic media to raise this issue on a priority basis.