Hollywood Promises To Talk About It!
Takong Delvis N's Story (Founder-Cameroon Epilepsy Foundation)
According to the human rights charter everyone has a right to life, liberty and security according to the Universal declaration of human right (Article 3), but life can hardly be worth living when one is deprived of good health. Worst still, unable to afford for basic medical care or when subject to stigma from the people who are supposed to be of help. In Cameroon medical attention is tilted towards those suffering from diseases which can be said to be of a global magnitude to the detriment of other health conditions that have a devastating impact on its victims but operate insidiously. It will be common to hear of HIV AIDS, Malaria, cholera etc. whose impact of course cannot be undermined, nonetheless there exist a disease whose silence has loud consequences.
I watched my elder sister Jane suffer due to Epilepsy from when I was a kid until now that I'm an adult. She dropped out of school because other students and even some teachers couldn’t stand a seizure attack from her. ‘Each time I had an attack, everybody would run away from me. I used to seat alone on my desk.’ These are some of those heart pounding words from her… This continuous stigma made her tell my mom that she wanted school no more. Her next choice was to learn needlework. My parents struggled to get her a place where she could learn what she wanted, but her condition made people refuse her each time she had an attack at work. When she succeeded to learn needwork after a long fight with the stigma, she decided that she would work from home. She would do her crafts and my Mom will carry them to sell in her job side. She also wanted to teach, but had no students coming to learn from her still because of her condition.
Now she is 33yrs old. She changed her trade because of little or no customers and now makes Beads. Not married, no boyfriend, no friends. I see the pain in my mother’s eyes each time she looks at her. I hear grief in her voice each time my sister has a seizure attack. Tears fill my eyes each time my elder sister talks, each time I see her mates get married and make a better life, each time she has to struggle to get a thread into a bead, each time I think of who she would have become, but for epilepsy and its associated stigma…
Her situation is even better, knowing that my parents are always available to assist her with medication and daily needs. With an estimated more than 35,000 people suffering from this disease in the North West region of my country where I live, many of these patients could hardly afford a daily meal, or their medication. These people suffer in silence as they hardly have a voice of their own. They are cut off from their dreams, can hardly afford drugs to better manage their condition. They are accused of witchcraft, and find it hard to do daily activities for fear of the danger of unprecedented seizures. The reason for this is that epilepsy is highly stigmatized in this area because there is much fear and mystery surrounding it. People believe that seizures are contagious and that the sickness is a result of a curse or evil spirits.
When someone has a seizure, the general public often does not know what to do. Ignorance leads to fear and people run away, leaving the convulsing person to fall into actively burning fires, pots of oil, out of moving vehicles or into bodies of water. They suffer debilitating burns and injuries and some die, not from the epilepsy, but because they simply were not moved to a place of safety. In most of these places with a high percentage, Ngie, Widikum, Batibo… you can quickly identify Epileptic patients from their looks. Their faces are similar, grim, spiced with scars from debilitating burns and injuries. See the pictures below …
Some of the injuries are emotional and less apparent. Children with epilepsy tell us that they have lost friends once they started having seizures, same story like my elder sister’s. They find themselves excluded from social activities and some removed from school entirely. Most won’t even have the chance to sit in Church and worship God, fear of the stigma as it has no bounds. Without education, all hopes of living a normal life as an independent adult vanishes. People with epilepsy struggle to get jobs, and without employment they have no money to buy medication and their seizures only become worse confining them to their homes. In some cases, they end up with traditional healers. You see them staring close at you, but their minds are thousands of kilometers away.
Most of them are not even a master of their story, you'll need to contact a close relative to get their information.
Epilepsy must get out of the SHADOWS.
This is a promise I made to myself 3years ago. To start with Advocacy, I made a 1hr5mins documentary film on Epilepsy in this region. Please watch the trailer below.
From all the stories I heard and considering the myths, stigma, living conditions, medication and generally the situations of the patients everywhere I went. I decided to start a CIG with some of my friends so we could advocate for them and help better their situation. After existing for over three years now, we decided to expand to an association (Cameroon Epilepsy Foundation), but again we have a lot of financial setbacks because we get many more patients in our care as we penetrate the villages of North West Cameroon to give assistance. A lot of these patients are located in areas where we could only reach there by motorbikes or by trekking.
Visiting the Villages of Ngie Sub-division. Andek, Teze, Ajei, Etuii, Achang and Etoh known to have the highest prevalence in North West Cameroon.
Seizures can be effectively managed with the right medication. Today there are several different medicines on the market for the different types and causes of seizures in Cameroon. It is therefore important that a doctor is consulted so the right diagnosis can be made and people can be started on the right medicine. On the right treatment, seizure frequency can be dramatically reduced to allow people to live independent lives. However it’s not the case with most of the patients we’ve come across. Most of them have never had the opportunity to meet a medical doctor all their lives, but they just go to the market and buy drugs most of which are not the right ones for them. They all take phenobarbitone without prescription and in most cases, it’s not effectives and in some cases it aggravates their situation.
The cost of effectively treating epilepsy on the two medicines readily available in Cameroon range from 1350 CFA (2.7USD) a year on phenobarbitone to 36,000 CFA (72USD) a year on carbamazepine (tegretol). This is a fraction of what the government currently spends on malaria and again, it is above the social standards of most of these patients.
I am pleading to the World to help assist us in this fight so we could improve the living and health conditions of these patients through our campaigns, education workshops in schools, churches and groups, and in assisting them to get the right medication and jobs. Make a DONATION, Save a life… Contact us at: +237 7441 9471, +237 9331 3035 or visit our website at: www.camepilepsyfoundation.org. Our Facebook page at: https://www.facebook.com/cameroonepilepsyfoundation and together, let’s put smiles on these faces that have been void of smiles all their lives.
Takong Delvis N (Founder-Cameroon Epilepsy Foundation)
On Twitter: https://twitter.com/delvis4life