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Epilepsy, It's myths, Stigma and associated problems in NW Cameroon

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 suffers Epilepsy from when I was a kid till now that I’m a grown up. 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.’ Some of those heart pounding words from her…
This continuous stigma made her told my mom that she wanted school no more. Her next choice was to learn needing. My parents struggled to get her a place where she could learn what she wanted, but her situation made people refuse her each time she had an attack at work. When she succeeded to learn needing after a long fight with the stigma, she decided she’ll work home. She would do her crafts and my Mom will carry them to sell in her job side. She had no students coming to learn from her still because of her situation.
Now she is 33yrs old. She’d 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 grieve 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, talk less of 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 situation, 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.
My sister Jane making her beads at home. Visit www.facebook.com/megabeads to order for yours
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 Figures 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.
Epilepsy must get out of the SHADOWS. A promise I made to myself 3years ago. To start with Advocacy, I did a 1hr5mins documentary film on Epilepsy in this region. Watch the trailer here (http://www.youtube.com/watch?v=OBhkxKnTLko). 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.
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 is 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. But 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.camepilepsyfdtn.org, our Facebook page at: Cameroon Epilepsy Foundation 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)

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Comments

Anita Muhanguzi's picture

Great Work

Dear Delvis,
You are definitely doing great work and thank you for sharing your stories. Continue to post more of your stories in your journal and i encourage to continue with the great work. You can find so much funding information on the resource exchange page. I would also encourage you to look for on-line volunteers who can promote your website and the stories through the different social media sites so that you can reach more people. There is magic in numbers. I would love to help you find on-line volunteers to promote your cause. Otherwise thank you once again for the great work.

Mrs. Anita Kiddu Muhanguzi
Head of Legal and Advocacy
Centre for Batwa Minorities
a.kiddu@gmail.com
cfmlegal@gmail.com
Skype: mrs_muhanguzi

Dear Anita,
Thanks so much for your encouraging words which i will live to cherish. It's with the support of you beautiful people that am encouraged to carry on this task. With time you people would probably get more from me, get to know about the heart-pounding Myths associated with Epilepsy here. I would be very grateful if you help me get the online volunteers. We really need exposure out there. Thanks again for your suggestions and encouragement. I look forward to hear from you
Stay blessed
Takong

Takong-
First, let me welcome you to this World Pulse community- we are so glad that you have joined in.

Your story is a familiar one to me, as a sister of two brothers with retardation and other issues, one of them being some seizures. I know the pain of people turning away, not having friends as a child because of how uncomfortable strangers were around them and around me. Thankfully things are different now here, and most people do not shy away anymore. But my scars remain as a reminder of past pains.

I would thank you for your work, but as a sister to my brothers, I know that to us it is not work or pity or generosity...it's just us. We will not turn our backs on our siblings. We are proud of them. Their pain is our pain.

There is a resource page on this site where you may be able to find some resources or some direction of where to look. https://worldpulse.com/pulsewire/exchange Connecting with others here is also a good way to find what is needed. Please do not hesitate to message me to my inbox with any questions or concerns.

Thank you for standing with us. Thank you for the example of love. Pain may remain, but hope endures.

Let us Hope together-
Michelle
aka: Cali gal

Listener
Sister-Mentor
@CaliGalMichelle
facebook.com/caligalmichelle

Takong Delvis's picture

Michelle, Hope endures

Michelle
Thanks for your heart felt words. I'm so so grateful. We don't ask for such situations to our families, but I strongly believe has a reason why he brings it to us. And I believe it's because he's seen the potential in us to take actions that could help not just our relatives, but a community, a generation. Glad to know i am not fighting alone, thanks for being there to hope with me. Thanks for the resource link. Will take a look at. All i pray for is for is volunteers all around the world to spread the message across. I need advice and support to carry on the projects we have here to remedy the situation. I'll be bringing on more details on this topic as time passes by on this blog, or on our website www.camepilepsyfdtn.org. Thanks again for your words. I appreciate
Stay blessed
Takong
delvis4life@yahoo.com
Takong@camepilepsyfdtn.org
twitter.com/delvis4life
facebook.com/delvis.takong

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