This is the first time I am hearing about a charity working on epilepsy in Nigeria and I am wondering perhaps, just like the disease it seems every organization working on epilepsy are also affected by the stigma?
People dread epilepsy because they don’t know what it is. Epilepsy is to me is a mere seizure disorder which can be treated. The only reason why it seems not to be known is that epilepsy patients are locked up in their homes while their families gallivant around and go to parties. People working on epilepsy issues are also not known because patients and their families want to come to you secretly and get their medication and go. The funny side of it all is that families of patients who are wealthy do not want to contribute towards assisting us to buy drugs for other patients who cannot help themselves. People, out of ignorance believe that epilepsy is a spiritual attack and therefore tag it as a ‘disgraceful sickness’ or a ‘mysterious disease’ hence people run away from people living with epilepsy. Some people still mock us because they believe that the disease is not curable. They see our effort as waste of time. But so far, we have recorded a lot of success stories; convincing ones that I know will help to bring the society into reality.
Can you share one of such success stories with me?
I have a woman with two kids living with epilepsy. One was a very bad case. By bad case I mean the seizures were just too regular and she now has some form of disability from these constant seizures. And it is also because there is not always help each time the seizure occur. Since January this year, she has been on treatment and has not had any seizure or attack. And Im sure we’ll record some more results just that we need to waist some more. The problems most often is that many families and even patients are not patience enough; once they come they want the epilepsy to stop immediately. It takes time. But I guess our greatest success story is thatpeople are becoming aware of what epilepsy really is. They now know that the myths surrounding epilepsy are false. Patients now know that they can live normal lives. We need to give people living with epilepsy hope that is beyond stigma, and shame; hope that can boost their self esteem. We are reuniting shattered families due to the stigma and superstitions surrounding epilepsy. Above all, people are becoming aware of the causes of epilepsy that epilepsy is not a spiritual or mental problem but a seizure disorder which is as a result of brain injury not a lizard in the stomach as the native doctors would want us to believe.
It is obvious that the most tasking part of your work is trying to demystify epilepsy?
Definitely! And that is because people have all sorts of funny ideas about epilepsy. Epilepsy is a condition not an infection and because of this it is not contagious. It cannot be contracted and people living with epilepsy can live normal lives. I believe that epilepsy is curable because whatever can be treated can be cured. People living with epilepsy and those whose children/wards have epilepsy should treat their children in good hospitals. The idea of running from pillar to post should not arise.
I’m trying to imagine your normal working day; do you visit hospitals, homes of patients, source for drugs? What’s an average day like for you?
Our normal working day is as normal as it is challenging. People come in for counseling; we take some for EEG (Electro encephalogram), patients are taken to hospital for diagnosis, treatment and checkups. People living with epilepsy and their families come into our office for drugs too. We buy drugs from the money we source for in Catholic Churches. Our day in the office is quite challenging as we do all these errands either on bikes or by commercial buses. In the morning, people are already in the office before we get there because they are anxious to get treatment as fast as possible.
What has been your experience with doctors regarding epilepsy?
I believe doctors are experts, they know what to do for someone living with epilepsy. They tell you what drugs to take only when you can describe your seizure type to them. However, doctors do not go home or live with patients hence I strongly believe that the opinion of the one that look after the patient is also very important. From my experience, each doctor has their different attitude towards epilepsy patients. Some doctors can attend to patients better than others. While some doctors also key into our awareness program and become resource persons in our seminar for free, while to others, we have to pay before they will ever appear at our seminars. Moreover, my experiences with younger doctors have been good because the new generation doctors have better training and mindset. So it is easy to flow with them.
How would you describe the state and quality of care for epilepsy patients; what is our health system we doing wrong with regards to treatment and care for people with epilepsy?
Everything is wrong. The quality of care is still very poor because about 80% of patients are not getting the help they need and that is because it is not available. Not until patients are aware that there is treatment for them, quality care will be poor. Many people are still ignorant of this disorder about 90% of the population do not know what to do when one is having a seizure. This people need help and the society has to know what to do also. For instance; there is no public awareness program on epilepsy apart from what Dr. Biodun Ogunbo is doing in Abuja. There is no government subsidised anti epileptic drugs. There are no plans for people living with epilepsy in Nigeria. People living with epilepsy in Nigeria are suffering with no one to counsel them; they lack institutional support from government in the areas of drugs and employment. Not until these are done, myths about epilepsy will still be a serious matter.
Stigma and discrimination are two factors associated with epilepsy, do you have experiences you wish to share in this regards?
They are so many experiences to share a thousand and one of them .I have cases where children living with epilepsy and with minor seizures are not allowed to sit with other children in class, they are even given different plates in their own houses to eat. Most parents whose children are living with epilepsy in Nigeria do not give equal treatment to their children, they buy better cloths for the so called healthy ones and dress the one with epilepsy with ridiculous clothing’s. I visited the home of a child with epilepsy recently, the mother had invited me to come and see the child, on getting there, a child of about 17 years came out to welcome me, and I asked the mother, ‘is this a girl or a boy’? She told me that the child is a boy so I wondered why he was clad in a ladies dress. The boy was dressed in a rough gown, no boxers underneath. After walking around the house, I discovered that the boy stays all alone in the house during the day. This is unacceptable!
Funding is always a major challenge for organizations like yours but what other challenges are you confronting in the course of achieving your foundation’s objectives?
As everybody will expect me to say, fund raising is a major challenge to our organization. Companies would rather donate to HIV/AIDS-where there is already so much money and other diseases they consider more serious. But the greatest challenge is getting people affected to come out and listen to talks, to seminars, talks that affect their lives. Their families don’t want to come out. They want their kids and family members living with epilepsy locked up in their homes. How sad! They (patients) should be allowed to live normal lives. Seizures can be controlled when the right drugs are taken. That we have to also raise funds to buy their drugs is another challenge because patients and their families prefer giving the money to false prophets who tell them lies that they want to hear.
How many organizations and individuals are you currently receiving support of any kind from.
The only organization I have always received support from is the Catholic Church. We received materials from GLO Nigeria during our rally. Sometimes last year, 7Up supported with 5 creates of drinks. I am so grateful to the Catholic Communities they donate to us to enable us carry on the campaign in other places. Individuals like The Oba of Benin and the Church of God Mission and a few others are additional sources of donations we have received. One of my concerns with our giving to charity is how vain some organizations can be through their donations; companies need to set their Corporate Social Responsibility priorities right and give to those solving critical and often ignored problems not just about how fancy the work is or the publicity they can get. We need to consider people living with epilepsy because sometimes it could be a dark, lonely and silent world of shame.
Unlike other diseases especially HIV/AIDS there are not many foundations working around epilepsy? Could it be because the disease is not as serious as HIV?
Of course, the disease is may not be as serious as HIV, but why are people hiding in their homes? Why are they not coming out to be of positive impact to the society? The myths surrounding epilepsy is highly shaded unless you are directly involve and willing to know the truth you will be in the dark and ignorant world of epilepsy. Many people do not want to associate with epilepsy sometimes they even do not want to associate with me because of the belief that epilepsy is an evil disease. Even people whose children suffer from epilepsy don’t even want to call it epilepsy. They sometimes will say “madam my pikin get the thing wey you talk for T.V today o, How we go do am”? (Meaning; my child has that thing you talked about on TV today, what can we do about it?)
From your experience what would you recommend as template for effective care for epilepsy patients in Nigeria?
It begins with helping patients not to see epilepsy as any form of limitation. They should refuse to be stagnant just because they have seizures from time to time. After all ‘to him that is joined among the living, there is hope. For a living dog is better than a dead lion’. Epilepsy is a disease of the brain. It only means their brains are more hypersensitive than the other. So, there is no room for stigmatization. As a template, effective care for epilepsy is awareness and access to early and affordable and good quality diagnosis. If people know that epilepsy is not contagious and can be treated, I think those affected will feel better. So the watchword is awareness and early detection.
This interview originally appeared on NIGERIAN HEALTH JOURNAL and can be viewed here http://nigerianhealthjournal.com/?p=1662