Purple Day: Epilepsy is a treatable ailment; not stigma

Karachi: Noted Pakistani neuro-physician and the President of the Epilepsy Foundation Pakistan, Dr Fowzia Siddiqui, has said that epilepsy is a curable ailment and not a stigma. She added that the government, healthcare practitioners, and caregivers should give particular focus to epilepsy patients for their proper treatment and recovery.

She said this while speaking at a free medical camp organized for epilepsy and neurology patients at the Aafiat Clinic, Gulshan-e-Iqbal, in collaboration with Searle Pharma on the occasion of International Purple Day. Dr Fowzia and Dr Atif Saeed Anjam examined patients at the medical camp and conducted different neurological tests.

Dr Fowzia said that Purple Day is a global event created with the intention to increase worldwide awareness of epilepsy and to dispel the common myths and fears associated with this neurological disorder. The purpose behind observing this day on March 26^th every year is to reduce the social stigmas commonly endured by many individuals afflicted with the condition; to provide assurance and advocacy to those living with epilepsy that they are not alone in their ongoing endurance; and to initiate individuals living with the condition to take action in their communities to achieve these aims.

The concept of Purple Day was initiated by a 9-year-old named Cassidy Megan, who was motivated by her own struggle with epilepsy. The Epilepsy Association of Nova Scotia helped develop Cassidy's idea, and the first Purple Day event was held on March 26^th, 2008, and is now known as Purple Day for the epilepsy campaign. In 2009, the New York-based Anita Kaufmann Foundation and the Epilepsy Association of Nova Scotia joined hands to launch Purple Day internationally and increase the involvement of numerous organizations, schools, businesses, politicians, and celebrities around the world. On March 26^th, 2009, over 100,000 students, 95 workplaces, and 116 politicians participated in Purple Day.

Dr Fowzia said that on this day, people across the globe come together to raise awareness regarding this condition and make a difference in the lives of people affected by epilepsy.

She informed that about 50 million people have epilepsy worldwide. It is estimated that 1 in 100 people have epilepsy. However, in 50% of cases, the cause is unknown. She said that an estimated 100,000 people in Karachi suffer from epilepsy. However, a survey conducted in urban areas has found that only a quarter of these seek medical advice. A huge stigma surrounds this disease in our society. Women and children suffer most due to the embarrassment and misconceptions associated with epilepsy.

She stated that epilepsy is a largely misunderstood neurological dysfunction that causes electrical discharges in the form of symptomatic seizures. The WHO estimates that up to 70% of the people who receive treatment respond successfully.

Dr Fowzia regretted that the number of cases of epilepsy in Pakistan is the highest in all of Asia. With the rate of 9.8%, Pakistan tops in Asia regarding epilepsy burden, followed by Sri Lanka. However, the matching efforts are not seen from the government or society to reduce the burden of this disease. She said that India had achieved amazing success in control of epilepsy and the rate of these cases in India now is just 4%. In Pakistan, epilepsy drugs are very costly and beyond the reach of low-income patients. She urged the government to subsidize these drugs.

Dr Fowzia reminded that epilepsy is a disorder of the brain. People who have epilepsy have electrical activity in the brain that is not normal, causing seizures. There are different types of seizures. In some cases, a seizure may cause jerking, uncontrolled movements, and loss of consciousness. In other cases, seizures cause only a period of confusion, a staring spell, or muscle spasms. Epilepsy is also called a "seizure disorder." Epilepsy is not a mental illness, and it is not a sign of low intelligence. It is also not contagious. Seizures generally do not cause brain damage. Between seizures, a person with epilepsy is no different from anyone else.

The primary symptom of epilepsy is seizures. A single seizure is not considered epilepsy. People who have epilepsy have repeated episodes of seizures. Before a seizure begins, some people experience dizziness or emotional changes. They also may undergo changes in vision (such as hallucinations), smell (smelling an odor that isn't there), and touch (such as numbness or tingling) — feeling these things before a seizure is called an aura. Recognizing an aura is useful as a warning that you are about to have a seizure.

She said that one should immediately consult a doctor if the seizure lasts longer than 5 minutes. If the patient injures himself or herself during the seizure, if it takes longer than normal to recover after a seizure, and if seizures become more severe or happen more frequently; it is prudent to seek professional help at one’s earliest convenience. Patients who are pregnant or have diabetes have a much higher risk. If a patient has a sudden headache, numbness, or weakness in one side of the body, or problems with vision or speech right before a seizure, he or she should be taken to hospital as it could be signs of a stroke.

To diagnose epilepsy, your doctor will review your medical history and perform a neurological exam. Your doctor may also recommend blood tests. He or she may also order an electroencephalogram (EEG), computed tomography (CT), or magnetic resonance imaging (MRI). These tests allow your doctor to monitor your brain activity and examine your brain for problems such as bleeding or tumors.

Epilepsy usually is treated with medicine. If medicine doesn’t help, the doctor may recommend surgery or other therapies. If the doctor knows what is causing epilepsy, treating the cause may make the seizures stop. Medicines that help prevent seizures are called anticonvulsants or anti-epileptics. A doctor will recommend medication based on the type and frequency of seizures, and age, and general health of the patient.

Dr Fowzia requested the government to open special wards for epilepsy patients in government hospitals and start programs for the training of neurologists, as the number of well-trained neurologists in Pakistan is depressingly low.