When the Gbm-em Country Director Ms Marie Abanga, attended the third African Epilepsy Congress in Dakar last May 2017, one of the pertinent issues which kept resurfacing in almost all presentations was the socio-cultural implications and limitations of epilepsy. From Asia, through the USA and via Europe and all through to Africa, the consensus was that there was still such a stigma attached to epilepsy and this stigma came from the community and persons living with epilepsy themselves. We were all encouraged to step up our outreach and advocacy upon return to our various countries.
It was in that respect that the Gbm-em Country Director was honoured to be hosted by the national media (CRTV) in its South West Regional Station in Buea, Cameroon, on one of its highly listened to programs called Health Talk. The Country Director was being interviewed about the work of the Foundation and she was giving room to talk in depth about epilepsy and the surrounding stigma which plagues both the person living with neurological condition as well as the community at large.
Ms Abanga seized the opportunity with gratitude to remind listeners about the mission of the Foundation set up after very personal tragedy. The Gbm Foundation for Epilepsy and Mental Wellbeing is an outreach and advocacy foundation operating in the geographical region of Cameroon in Africa, which seeks to contribute towards the fight against all forms of stigma, rejection and abuses of persons living with epilepsy and mental illness. The foundation has been doing just this through sensitization campaigns on epilepsy using the print media, community radios in English, pidgin and local languages, and the national radio. A solidarity walk to bring epilepsy out of the shadows was organized in 2015 in Douala and medical missions to sensitize the populations in the pilot areas as well as facilitate their access to diagnosis and treatment have also been periodically organized.
Specifically on stigma, the country director held that this was a large result of the false beliefs and practices held by the community from generations, beliefs which castigated epilepsy to the realm of sorcery. Any ‘culprits’ of this manifestation were not considered innocent victims but elements to be shunned and even forthrightly abused. Sadly enough, some of this rejection and abuse came from the families of the patients themselves who now suspect their once innocent members. The vicious cycle now saw these victims stigmatize themselves by isolation and other futile attempts at safeguard which often were awkward enough leading to their further stigmatisation.
Access to proper diagnosis and anti seizures medications was also a big problem. Since many living with epilepsy could not even afford proper diagnosis or medication, and neither could their families, the first ‘consultation’ of choice for many were traditional healers or faith healers in churches. None of these stops provide any solution nor sustainable relief, and the frustration and exasperation lead to despair and further stigmatisation.
In conclusion, the country director called for a shift in mindsets and approach from all stakeholders involved. Empathy not sympathy, love and acceptance not rejection, awareness of scientific research and options, and tolerance of the possible side effects and cognitive behavioural challenges which may occur as a result of taking the anti-epileptic medications were her final words.
Get Involved to trash out the Stigma and Shame
Fighting against stigma and shame is a continuous struggle simply because there seems to be no end in sight to mankind’s ‘illiteracy’. There seems to equally be some invincible force putting a big and resisting grip on some minds which could have shifted the negative perceptions held by a large chunk of our Cameroon society. The Gbm Foundation for epilepsy and mental wellbeing is contributing its mite, via various forms of social media and other projects, but she desperately needs all the support she can get to keep up with such endeavours. We collaborate with other national and international media bodies to spread the word against stigma, but as a barely two year old organization, our outreach is still limited especially due to unavailable human and other resources. Together, we can achieve more.