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There is a general belief that the condition is caused by evil spirits/demons and patients are possessed or get seizures as punishment and also that the condition is contagious. This misconception culminates in people shunning  patients with epilepsy.
There is a general belief that the condition is caused by evil spirits/demons and patients are possessed or get seizures as punishment and also that the condition is contagious. This misconception culminates in people shunning patients with epilepsy.

Demystifying Epilepsy

The Coordinator of the Fight Against Epilepsy Initiative in Ghana, Dr Cynthia Sottie, has advised against the forcing of spoons and other objects into the mouths of patients with epilepsy  during seizures.

She said that could rather harm the patient; that could cause  broken tooth or dislocation of the jaws.

Dr Sottie explained that because of the  misconceptions  about the condition, people tended to forcibly restrain patients having seizures and try to force their jaws apart by inserting all manner of objects in their mouths thinking they might swallow their tongue.

“What should be done is to leave the patient to go through the seizure while we ensure a safe environment by  creating space and making sure that there is nothing around that can harm him or her,” she said.

Dr Sottie gave this advice in an interview as part of efforts to create awareness of the condition, as February 13 is celebrated as World Epilepsy Day.  It is being celebrated  on the theme: “We are putting epilepsy in the picture.”

She said patients who experience seizures for the first time should visit a health facility for assessment and that  seizures  did not usually last  more than three minutes.

After  a  seizure the patient should be placed on his/her   side to drain any saliva  while he/she is  observed until  full consciousness.

She said discrimination and stigmatisation were other issues posing challenges to the welfare of patients and preventing their social integration.

There is a general belief that the condition is caused by evil spirits/demons and patients are possessed or get seizures as punishment and also that the condition is contagious. This misconception culminates in people shunning  patients with epilepsy.

 Brain scan and convulsion waves

Causes/Prevalence

 Dr Albert Akpalu, a neurologist at the Korle Bu Teaching Hospital, said epilepsy  is not contagious but a medical condition that is  prevalent all over the world and affects people of all ages, sex and race.

He explained that it is a neurological condition characterised by recurrent seizures, with the seizures being caused by disturbances in the electrical functions of the brain.

The causes of the seizures, according to Dr Akpalu, vary.

They may be due to neurological infections, head injuries, brain tumours, brain damage from prenatal or perinatal causes, stroke or genetics. But in some cases, the cause remains  unknown. 

The good news, however, is that epilepsy can be treated, and with regular treatment  70 per cent of people with the condition will  be seizure free.

The challenge, however, is that the misconceptions and myths of the condition continue to prevent people from seeking medical attention.

In Ghana, one per cent of the population have the condition. This puts the figure at 250,000 people. Sadly, about 85 per cent of them do not seek treatment and rather visit prayer camps and shrines/traditional priests or priestesses.

 Dr Albert Akpalu (middle) with Mr and Mrs Larbie

Person living with epilepsy

Mrs Francisca Larbie, 43, is  an epileptic patient. At the age of six, she started having what her grandmother described as convulsions. They often happened in her sleep and she regained consciousness without knowing what had occurred, except to feel that the mood in the home was gloomy.

Her grandmother often sent  her to traditional priests who all concluded that some evil spirits  from her mother’s family were causing her seizures. In spite of the many instructions, concoctions and prayers, Mrs Larbie continued to have seizures. She could not go out on her own because she was not sure when she could get a seizure. Fortunately, however, she was able to attend day school.

Her situation persisted until her aunt who was working at the Korle Bu Teaching hospital brought her from the Central Region for treatment. Since then, Mrs  Larbie has been leading a more meaningful life.

 “I’m on medication and I’m able to go wherever I want to and from a situation where I could have seven or eight seizures a day, I can go for months with none,” she said.

In addition to the improvement in her condition, Mrs Larbie is a testimony that dispels the myth that patients with epilepsy  cannot have children.

She has been married for 10 years to Mr Thomas Papa Nii Larbie and they have two children — Pearl and Albertina.

Mr Larbie faced some challenges when he decided to marry Francisca, especially when his family got to know of her condition. But he persevered because he loved her and was ready to stick to medical advice in order to make the marriage work.

The couple needed to seek medical advice when they decided to have children because some epileptic medications are not advisable for pregnant women. With the proper care she got from Dr Akpalu, she now has two children.

Mr Larbie speaks of how far the family has come in their bid to be together against the odds. He recounts an occasion when he had to quickly pick up the baby his wife was breastfeeding when she had a seizure, until she was able to manage the situation when she figured out the early warning signs.

For now, the whole family has decided to work together to create awareness of the condition to dispel the myths and educate people that the health facility is the right place to seek attention. They, therefore, go round the country whenever the opportunity avails itself to give talks about their experiences.

What Mrs Larbie would want to see is  an increase in the number of medications for epilepsy on the National Health Insurance Scheme list. Currently, there are only four of them, thereby limiting the options that doctors can prescribe, even though there are many for different types of seizures.

Dr Sottie is also appealing for funds to enable the initiative to carry out work in areas they had not yet reached in order to increase awareness that would lead to less stigmatisation and, most importantly, prompt patients to seek care in health facilities to lead better lives.

This is because the four-year  initiative which started as a pilot project with funding from Sanofi Espoir Foundation ended last year.  The initiative, therefore, needs support from government, partners, donors, NGOs, private institutions and organisations.

For his part, Dr Akpalu would like epilepsy care, which has been placed under mental health care for convenience, to be integrated into the Ghana Health Service under a National Epilepsy plan and strategy.

The Ghana Fights Against Epilepsy Initiative  is  seriously considering  this as it  will improve access to care, reduce stigma from health personnel and improve availability of medication through the NHIS.

He said,  “What you do to mark the day, in your own way, with the resources available to you, will make a difference to the 65 million people in the world who are living with epilepsy,”

 Mr and Mrs Larbie and their children,  Albertina and Pearl

About the celebration 

International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February to promote awareness of epilepsy around the world. With IBE and ILAE representation in more than 120 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers in every region of the world.

 

 

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