KARACHI: President of the Epilepsy Foundation Pakistan, and neurologist and epileptologist, Dr Fowzia Siddiqui said that there is a need of proper legislation to secure the rights for the people with epilepsy. Appropriate legislation that shall guarantee human rights of people with epilepsy
On the occasion of the International Epilepsy Day, she said that this day provides a platform for doctors treating epilepsy to create awareness about the misconceptions of the disease and for people with epilepsy to share their experiences and stories with a global audience. This year's theme is “end the stigma”.
The Epilepsy Foundation of Pakistan on this day together with IBE calls for all people to advocate for appropriate legislation that will guarantee human rights of people with epilepsy and encourages people with epilepsy to live to their fullest potential. She said that epilepsy is a treatable medical condition not a spiritual punishment of demonic possession.
Dr Fowzia Siddiqui said despite being one of the world's oldest known medical conditions, public fear and misunderstanding about epilepsy persist, making many people no wanting to talk about it. That reluctance leads to pushing people with epilepsy into shadows, and social isolation.
The ignorance about this mystic condition and lack of understanding about individual risk, leads to discrimination in workplaces and communities. For people living with epilepsy, the misconceptions and discrimination can be more difficult to overcome than the seizures themselves.
However, Dr Fowzia Siddiqui, President of Epilepsy Foundation Pakistan at an art competition organized by NARF said the purpose of these activities is to raise awareness and educate the general public on the true facts about epilepsy and remove the stigma and fear of demonic possession.
She emphasized on the urgent need for improved treatment, better care, and greater investment in research.
She said Anti-Seizure medicines should be given life saving status as without them these peoples brains will wither away and they will die.
In a facebook live session from Aga Khan University, she elaborated on some facts about epilepsy like 65 million people around the world have epilepsy. She said some 2.2 people in Pakistan live with epilepsy. 4 to 10 out of 1,000 people on earth live with active seizures at any one time.
Dr Fowzia said one-third of people with epilepsy live with uncontrolled seizures because no available treatment works for them.
She said for 6 out of 10 people with epilepsy the cause is unknown. Each year, more than 1 in 1,000 people with epilepsy die from sudden unexpected death in epilepsy, known as SUDEP.
She said 4 out of 10 people with epilepsy in the industrialized world do not receive appropriate treatment.
She said 8 out of 10 people with epilepsy in developing nations do not receive appropriate treatment.
She said there are over 50 different types of seizures.
The Epilepsy Foundation Pakistan holds regular free consultancy camps in underserved communities, collects data and helps provide subsidies for anti seizure medications and free medicines as possible.
A similar free epilepsy camp with subsidized diagnostic facilities was held at Neuro care on Monday 13th 2023 where many patients with epilepsy who were unable to afford treatment received free consultancy, tokens for year’s supply of medicines and diagnostic tests.