By Kemo Cham
In Sierra Leone ignorance about epilepsy is fuelling stigma and discrimination against sufferers of the medical condition caused by brain disorder, according to campaigners and doctors.
Epilepsy is widely associated with witchcraft and many sufferers endure extortion and torture in the hands of traditional healers who take advantage of a severe knowledge gap that drive even conventional health facilities to turn away patients.
Epilepsy is a neurological disorder which often manifests itself in the form of seizures.
The Epilepsy Association of Sierra Leone (EASL) estimates that between 60 and 80, 000 people live with the condition in the country. But a major problem is that majority of these people hardly know that they are suffering from it.
Neurologist, Professor Radcliffe Lisk, who heads the Ministry of Health and Sanitation (MoHS)’s epilepsy programme, said up to five years ago when the unit was first established there was very limited treatment and lack of expertise in epilepsy management.
Since 2010 Lisk has overseen the training of 1, 400 health workers attached to various health centers and clinics on how to give basic aid to sufferers. This number, he told Politico, is nowhere near what is required.
In 2013 Lisk published a hand book for health workers titled: 'Epilepsy in Sierra Leone.’ The 28 page book is intended to demystify the condition with the basic knowledge on it. Health workers and the ordinary man are informed on how to handle various situations of epilepsy attacks.
By mainstreaming the programme within the health system people will get to know their status and have confidence to report to health facilities, he said.
The offices of the EASL, situated at Number 8 Mansaray Street, Rokupa, Wellington, east of Freetown, serves as a drop in center for vital information about the condition. Though the Anti-Epileptic Drugs are hard to get in the country, but through donor support, the association has been able to secure a consignment of phenobarbitone (30mg) tablets which is the basic treatment for epilepsy in the developing world.
Max Bangura, its founding President, sacrificed a huge portion of his private dwelling to make space for offices from where he and his team coordinate their activities. He said the huge demand for the medication demonstrated the increase in awareness about the condition.
But, he added, more needs to be done to get not just sufferers but also the public to know about the condition and respond appropriately when someone is attacked.
Torture and broken marriages
Epilepsy is a chronic disease, just like high blood pressure. This means that it is only treated by controlling it. The lack of a permanent solution has fueled all sorts of myths around it. Some believe it’s atonement for past sins committed by forefathers, said Bangura.
“The worst part is that people misunderstand it as contagious and that has increased the risk for the sufferers,” he said.
EASL is particularly concerned about the effect on school pupils who suffer from epilepsy.
Many parents, out of ignorance, detest the idea of their kids sharing a class with epileptic kids, and school principals find it easy to do away with a few epileptic kids to keep the majority.
This way 40 percent of sufferers discontinue school because of this, according to the EASL which said it had identified 1, 037 children dismissed from school for their condition.
Some parents of sufferers voluntarily keep their children at home out of the shame caused by the stigma.
“Because of this misunderstanding surrounding this condition, we thought it fit as an organization to target schools in our sensitization,” said Bangura.
And all this prove rewarding for traditional healers who unleash further suffering on their patients through sexual abuse and all sorts of torture in the name of treatment.
One mode of treatment is called fumigation. The patient is subjected to a boiling pot of herb concoction. Some patients get burnt during this process.
There is also scarification, which involves inflicting markings all over the body of the patient and on them ‘medicinal’ powder is introduced.
Another widely held belief is that women with epilepsy can’t bear children. This way many marriages have been broken.
Faced with this situation, some sufferers sometimes want to give up by committing suicide, according to Bangura.
“This is simply because they often blame the epilepsy on their misfortune…,” he said. And because of this, he added, counseling is crucial in the treatment of epilepsy.
For most epilepsy sufferers, treatment is life-long.
In the developed world, treatment is ages ahead of what obtains in developing countries like Sierra Leone. Phenobarbitone, for instance, first discovered in 1912, is no longer the first line treatment in the Western world. WHO however considers it so for the developing world because of, among others, its affordability.
In Sierra Leone the medication is used to treat about 80 percent of patients. But it is not so easy to find them in pharmacies. This maybe partly because it is classified by the Pharmacy Board of Sierra Leone as a ‘controlled drug’, due to the high risk of abuse, but also because pharmacies do not consider it as profitable.
Budgetary constraints
At a corner of Bangura’s office sits a huge carton containing the drugs of phenobarbitone 30mg, which was imported by the association through its UK-based partner Medical Assistance Sierra Leone, with an import permit given by the Pharmacy Board of Sierra Leone. The medications are dispensed on a cost recovery basis of Le 10, 000 (US$2) per month. This cost is constant even if the patient is receiving more than one type of tablets or receiving up to 120 phenobarbitone tablets a month, according to the association.
Professor Lisk, the only specialist on Epilepsy in the country, was consultant neurologist in the UK from where he resigned to return home. He is concerned that his efforts might go in vain. He said human resource and medication were the two most important things needed to solve the problem of epilepsy in the country.
Budgetary constraints means that he depends almost entirely on foreign supports to run his epilepsy programme.
Lisk said the Government Medical Stores doesn’t provide adequate medicine which meant together with the association they have to buy their drugs.
“If you have people who are trained and the medication you can treat 70 percent of the population,” said Lisk.
“I am not going to be here forever,” he added.
Epilepsy is hardly fatal by itself. It becomes only life threatening during attacks. For instance, when attacked while near fires.
Lisk and Bangura have a warning for everyone, regardless of your current state of health, The risk of getting epilepsy, they said, are everywhere. With a heavy blow to the head like in accidents, etc, one can get epileptic.
“This is one more reason why crash helmets are relevant for bike users,” said Lisk.
Epilepsy is also gotten via birth injuries, for babies. Children can also get it from cerebral malaria and meningitis infections.
Stress and trauma are also possible causes. And for a country that went through a tragic civil war, the high number of the condition couldn’t be dissociated from it. Brain tumours in adults are also a cause.
Only a very small percentage of epilepsy in developing countries is inherited.
“Epilepsy has no class, it has no distinction, it can happen to anybody and at anytime,” said Bangura.
But some progress has been registered over the years thanks to the efforts of the association and its partners. The MoHS, for instance, has appointed a focal person for epilepsy, and the condition has since been included in the list of diseases under surveillance.
With the help of a specially dedicated line [088555333] funded by the epilepsy programme, people are able to make call and seek help or advice from the EASL.
(C) Politico 25/02/16
