Raising awareness, tackling myths crucial for epileptics

Dar es Salaam. Over 1 million Tanzanians live with epilepsy, silently navigating a world shrouded in stigma and misinformation.

Despite scientific advancements, harmful myths about witchcraft and supernatural causes persist, leading to delayed diagnosis and potentially life-threatening complications.

Data released by the Chief Medical Officer, Prof Tumaini Nagu, show that at least 20 people in every 1,000 in Tanzania are epileptic.

She, however, called for more awareness to avoid stigma and other epileptic challenges affecting people living with epilepsy. Gracing the official opening of the second International Epilepsy Conference at the Muhimbili National Hospital (MNH) yesterday, Prof Nagu said that despite scientific evidence that epilepsy is a disease, it is still associated with myths related to supernatural causes, including witchcraft, possession by evil spirits, and divine or sacred diseases, particularly in low- and middle-income countries.

She said the myths are the results of poor health-seeking behaviours that affect the growth and developmental milestones of children and the quality of life of patients, like not allowing them to attend school or be allowed to play with other children, and that during a seizure they are left unattended. “Our duty as professionals is to create awareness and protect people with lived experiences and the community at large. It is our anticipation that, among the topics you will discuss, safety and effectiveness will be discussed. I challenge you to also discuss how you can scientifically address issues that matter to our patients,’’ said Prof Nagu.

Prof William Matuja, the chairman of the Tanzania Epilepsy Association (TEA), said that despite many years of knowledge that the symptoms of epilepsy are due to sudden excessive rapid discharge of neurons in the brain, in Tanzania, up to 36 percent of the adult population still attributes epilepsy to witchcraft and other supernatural causes.

“As a result, over 75 percent of patients with epilepsy consult traditional healers and spiritual leaders first, resulting in undue delays for appropriate modern medical therapy. It takes about one year from the onset of the first seizure to consult a modern facility,” said Prof Matuja.

He said the delay in seeking modern therapies results in difficult-to-control seizures.

People with epilepsy will suffer from physical complications due to seizures, including scars on the body, burn wounds, contractures, dislocation of joints, particularly shoulder joints, head injuries, and premature deaths.

Fides Uiso is raising a child with epilepsy.

For her, it has never been an easy journey to raise an epileptic child. There are a lot of negative comments made to her by the community, but she is only focused on how best she can care for her child, despite the stigma from the people around her.

“My child is turning eight years old now; he is now learning to sit and yet cannot talk. It took me a while to take him to the hospital due to the limited information I had on the disease. Currently, I am the good ambassador, and I founded the Tanzania Epilepsy Organisation to champion the diseases,” said Uiso.