By Leocadia Bongben
“I had difficulties getting married. Many warned her not to marry a man living with epilepsy. I helped convince my wife, saying epilepsy is not a transmissible disease. Nothing will happen to you. Then the girl came, saying I was the one God she showed she should get married to. We are married and have three sons. CODEF made me understand that I should take drugs regularly as prescribed.”
He is not alone.
Bissong Takang, a graduate in English modern letters, has also been living with epilepsy since 2003.
Born in 2001, the story goes that Bissong fell from a bunk bed and hit her head, and since then, she has been having a crisis; at times, she staggers, and part of her body goes paralyzed. Before her parents found out it was a health issue at six, it was already late. Her parents thought it was something mystical that happened to children, and they had to be taken to the traditional doctor.
Bissong was on and off from school, and teachers dispensed most of her lessons at home. She was curious to know why she was not studying like other children. She recalls having crises more than 15 times a day, in the early hours of the morning, from 5:30 until about noon. These crises were very violent, she would bite her tongue; if not shaken hard, she would not regain consciousness.
She was regarded as a child of witchcraft. In church, her mother, while presenting her kids, would push them to the back. At the hospital, she experienced psychological trauma to see that spit was coming out of the mouths of babies. This was the first time she saw other children living with epilepsy.
Coming from a family of seven, and the fifth child, epilepsy is something people think is related to witchcraft and the mystical. She is the only child in the family living with epilepsy, Going into business and living with epilepsy has not been easy.
In fourth grade, she stayed home when the crisis became serious, as she could no longer think or do anything. There are meals her mother noticed that each time she took her crisis was very violent: snails, okro, she would say she was not supposed to eat and was urinating in bed until the upper sixth. Thanks to CODEF, she is a point of hope for others, portraying that people living with epilepsy can be what we want. Living with epilepsy does not mean disability or impossibility.
These two persons living with epilepsy shared their experiences at a two-day symposium under the theme “Combating the stigmatization of people living with epilepsy,” held at the Emergency Operations Coordination Center from May 30-31.
The symposium provided an avenue for expert reflection, the exchange of ideas, and discussions on the current challenges of managing epilepsy in rural communities in Cameroon. The meeting also looked at ways of improving the health and rights of people affected by this non-communicable disease.
Community Development and Epilepsy Foundation, CODEF, an NGO that works to provide care for epilepsy and HIV/AIDS in rural communities in Cameroon organized the symposium to raise public awareness about epilepsy, facilitated access to medical care, offered psychosocial support, and defended the rights of people suffering from these diseases.
The stigma attached to epilepsy and HIV/AIDS has profound and harmful consequences. It often leads to social exclusion, discrimination, and marginalization. CODEF envisions communities in which the stigma, ignorance, and fear of epilepsy and HIV/AIDS are replaced by knowledge, care, and inclusion of people with the disease, and the reduction of poverty and violence against women and girls, Nsom Kenetth, CODEF Director stressed.
As part of this fight, WHO has drawn up the first practical intersectoral global action plan (IGAP) for epilepsy and other neurological disorders, covering 2022–2031. This plan includes five strategic objectives dedicated exclusively to epilepsy, strengthening epilepsy care, and reducing the stigma associated with the disease.
The intersectoral global action plan on epilepsy and other neurological disorders 2022–2031 aims to improve access to care and treatment for people living with neurological disorders while preventing new cases and promoting brain health and development across the life course. It seeks to support the recovery, well-being, and participation of people living with neurological conditions while reducing associated mortality, morbidity, and disability, promoting human rights, and addressing stigma and discrimination through interdisciplinary and intersectoral approaches.
The strategic objectives of the global action plan address issues such as policy and governance; effective, timely, and responsive diagnosis, treatment, and care; promotion and prevention; research, innovation, and information systems; and a public health response to epilepsy.
During the meeting, CODEF expressed its need to be supported by all the stakeholders to mobilize the resources needed to continue supporting the program to raise awareness, improve access to care, and reduce stigma.
On the occasion, the representative of the Ministry of Basic Education presented a plan for the inclusion of persons with specific needs, which included persons with learning difficulties. An intersectoral plan for the development of inclusive education in Cameroon. The government requested a situation analysis of these disabilities, after which a national policy on inclusive education was proposed. Initially, in Basic Education, the plan was extended to other ministries that manage inclusive education, such as Social Affairs. This is where CODEF and other NGOs are called to participate to sensitize communities, local authorities, and the media. Persons with special needs have been identified, along with their educational needs and how to accompany them. These are socially vulnerable people presenting illnesses. He acknowledged that epilepsy was not given the pride of place.
It was revealed that there were no studies at the national level on the real situation of epilepsy, and neurologists solicited the support of the Ministry of Health to carry out such studies. Concerning drugs for people living with epilepsy, neurologists said there were drugs on the market, but cost remains a serious issue for patients who have to spend at least $50,000 a month on drugs.
CODEF was urged to communicate more in local languages, use tracks and social media to communicate, include communication experts to fight against prejudices and extend to other regions outside the West and East. For financing epilepsy, the director maintained that the government manages finances according to priority, security, and defense.
There is a ministerial plan of action to reduce neurophobia, there is a need to reinforce the capacities of the medical personnel. Studies have shown that using the word epileptic is stigmatizing, and it is better to address someone with epilepsy as someone living with epilepsy than an epileptic, The government has engaged in training para-medical staff in Ntui and Bafia in the management of emergencies to close the gap of staff unavailability, another neurologist revealed.
For CODEF, there is a need for intersectoral collaboration with one another. So all those institutions and NGOs working on epilepsy in Cameroon must work together for Cameroon to be the first country to show proof to WHO, or the world, that they are implementing and domesticating IGAP.