Karachi: At least two million Pakistanis suffer from epilepsy that is preventable diseases, said Dr Fowzia Siddiqui, noted neurologist, epilepsy specialist and president of Epilepsy Foundation Pakistan.
Addressing a seminar on “epilepsy: beyond seizures” on the occasion of the international epilepsy day, Dr Fowzia Siddiqui said that epilepsy is one of the most common chronic neurological disorders, requiring prolonged treatments and drugs.
She said it is a disorder that is widely misunderstood and carries a vicious stigma. Epilepsy comprises a vast group of disorders and syndromes with one common symptom: seizure. She said it is 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 traumatizing experiences. Dr Fowzia said estimated 20 Lakh people in Pakistan are suffering from the epilepsy. Sadly majority of these cases are preventable. Though the seizure is what manifests itself as the disease, the impact of epilepsy is way beyond that of the seizure.
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, treatment is delayed and if attempted causes a significant financial burden on the caretaker. Further, more the ignorance about this disease that is prevalent in our society has probably more impact on persons with epilepsy than the seizure. The concept of being demonically possessed remains prevalent as does this disorder being a mental illness, or some contagious plague is more than we would like to believe. These 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 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. She said 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. This should not be the case. Over 70% of epilepsy is treatable and patients can 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, she said, 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 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. She said this international epilepsy day if we can help create awareness to the outskirts of Pakistan we will have made a difference.
Noted neurologist and professor at Baqai University Prof Dr Arif Heerikar said epelipsy is a curable disease. He said it is necessary to raise awareness among the Pakistani society, so that the people can know about the fits and seizures. He said it is necessary to take care of such patient so that he could be saved falling and injury. He said the message of the international day is take the patient to expert doctor for a proper treatment.
Noted neurologist Dr Muhammed Hassan said that costly drugs and lab tests are main hindrance in proper treatment of this disease. He said that misconception and stigma related to this disease should be removed. He appealed for subsidy in medicines for treatment of this disease. He requested the print and electronic media to raise this issue on priority.