This week, slightly aside from the norm, I had the privilege of interviewing a very special young man, Takong Del Mezzo from Cameroon. As you may remember, last week I posted a video which offers a glimpse into the reality which thousands of people face who suffer with epilepsy.
Though not epileptic himself he has seen the tragic effect it has had on his sister’s life who does live with epilepsy. The opportunity for school in Cameroon was available to her; however, she states, “Each time I had an attack everybody would run away from me. I used to sit alone at my desk.” Now this didn’t just apply to fellow peers it extended to some teachers as well. This led her to leave school and find work, but when having seizures at various workplaces her employers would dismiss her leaving her unemployed once again. The outcome from these circumstances is that she now works from home, alone, and without friends.
An estimated 35,000+ live with epilepsy in the Northwest region of Cameroon. The attitude is a belief that it is caused by witches and wizards or the curse of evil spirits. Alienation occurrs by friends, family and even the church. The public are not aware of how to deal with seizures and are fearful as it is something unknown. In some situations, those experiencing a seizure will not have anyone to assist them to get to a place of safety and the outcome is that many have horrendous injuries including: falling into burning fires or hot pots of oil, falling out of moving vehicles and into water.
Many of the people have never seen a doctor let alone received a correct diagnosis. They have not the financial means to pay for this or medication. The cost of successfully treating epilepsy for the AED’s accessible is from 1350 CFA ($2.80) to 36,000 CFA ($75) per year, here in the West this is a pittance. In Cameroon, many are desperate and are unable to obtain this money which subsequently becomes a matter of life or death. There are approximately three AED’s available in the country. For some, with the money they do have they’ll buy one type of medication. It is often taken in the knowledge that they have no idea if the medication is the right one to take. This of course can make seizures worse; however, they are simply grabbing any opportunity which could potentially lead to a better quality of life.
The Cameroon Epilepsy Foundation was born three years ago after Takong realized that a significant change needed to be made. The Foundation consists of thirteen members, some of whom are family and others young medical volunteers. The government offers no financial aid which would make all the difference. Takong tells me if the money was to come through foreign aid it would probably end up in the private pockets of the government. Additionally, raising awareness for this cause brings challenges due to the money required to advertise in the papers.
Takong originally studied film making at Sydney University in Australia. After hearing the myths, stories, stigmas and living conditions which many experience, he started out with a group of friends visiting the communities. Here he acquired footage and interviewed the locals in order to capture the reality of the situation and began his journey of advocacy. He has completed one short documentary which I posted previously and is working on the extended version. Unfortunately, with circumstances as they are it is extremely expensive to move forward and finish this project. He continues to work to earn money which goes straight into funding his visits to the various communities offering a source of comfort and hope to all he meets. He offers counseling to families and those that he is able to provide medication for is money derived from his own pocket. He tells me, “We are at the stage now where we are unable to tell the villages that we are coming. We offer hope and on arrival we become inundated with people that we are unable to get to talk to, let alone help.” Despite this he is determined, positive, enthusiastic and refuses to give up on the challenge ahead.
When I asked him what his future aspirations were for the Foundation, he said, “I want to improve how people with epilepsy are perceived, accepted and valued in our society. I want to close the treatment gap between what is being done and what needs to be done. I want to help ensure epileptics and their families have access to a quality of life and to continue conducting educational workshops in schools, churches and at public events through the use of multimedia in a bid to alleviate the stigma.”
He is a true inspiration to all. He’s spread hope and joy to many who have resigned themselves to what may only seem like a bleak future, with his progress and hard work life is looking up.
His website is http://www.camepilepsyfdtn.org/