In many communities in Ghana, epilepsy is whispered in fear, mystery and misunderstanding, not to mention the stigma attached to it.
For Thomas Larbie, it became a test of love.
In 2006, just when he thought he had found someone he wanted to marry, he discovered that his fiancé had epilepsy.
She suffered one of her usual epilepsy episodes, and that was when he discovered her condition. Thereafter, she suffered a number of them, including one in church.
The reaction from those around him was swift: walk away; she can’t give birth; she can be a liability. There were a whole lot of things intended to put him off, but Mr Larbie didn’t. In 2007, he married his fiancé.
Mr Larbie shared his experiences as a caregiver of someone living with epilepsy at the opening of a meeting of stakeholders on the implementation of the intersectoral global action plan on epilepsy and other neurological disorders in Ghana held in Accra on Thursday, February 26.
The World Health Organisation (WHO) describes epilepsy as a chronic non-communicable disease of the brain that affects people of all ages.
It said around 50 million people worldwide have the condition, making it one of the most common neurological diseases globally. Nearly 80 per cent of people with epilepsy live in low-and middle-income countries.
In May 2022, the World Health Assembly adopted the intersectoral global action plan on epilepsy and other neurological disorders. One of the strategic objectives of the action plan is to strengthen the public health approach to epilepsy.
The WHO has been working in collaboration with the Epilepsy Pathway Innovation in Africa (EPInA) project, funded by the National Institute of Health Research, UK, in collaboration with the University of Oxford. The project was implemented in Kenya, Tanzania and Ghana in Ningo Prampram and Shai Osudoku.
The meeting was, therefore, meant to create a forum to discuss epilepsy care pathways, challenges, advocacy, and the availability of medicines for neurological disorders in Ghana against the backdrop of the plan’s targets.
Today, years later after the marriage, he stands not only as a husband of someone living with epilepsy but also as a father of two girls and an advocate for people living with epilepsy.
“I remember the first time I saw somebody with the condition was when I was in junior high school. The first day I saw my fiancée’s attack, it was very scary, and I had a lot of people who also saw it after some months and there were a lot of pieces of advice I got.
“I was like, I wasn’t backing out. I was determined to do it. I went ahead and I got married and I am so proud that I did,” he said.
After the marriage, Mr Larbie said that was when he began facing many challenges, including the loss of his first child at birth, which led people to refer to the warning they had given him before the marriage. None of this was enough to break him.
While seeking a solution to the challenges his wife was facing, he said he met some of Ghana’s renowned health experts in epilepsy, who were of immense help.
Thankfully, his wife subsequently conceived again, gave birth to their first child, a girl, and later to another girl. Describing the challenges of living with somebody with epilepsy as not easy, he said he sometimes got tired, but the thought of becoming a blessing to another person spurred him on to continue. Today, he has a success story to share as a caregiver.
Mr Larbie said that when accompanying his wife to clinics, the health experts asked them a lot of questions, including intimate ones like when they had last had sex.
Initially, he said those questions were a bit embarrassing for him, but when he realised they were intended to help them in the treatment process, he opened up to them.
His regular attendance at the clinics with his wife was how his search to learn more about epilepsy and his desire to be an advocate began.
Later, he said that his wife’s first specialist, one of Ghana’s renowned neurologists, Professor Albert Akpalu, gave him a pamphlet with the website www.epilepsy.com on the back.
He visited that site and, upon reading the information there, learnt a lot about epilepsy.
He disclosed that it was there that he realised his wife was not the only one with epilepsy, and that the disease burden was very high in Ghana, adding that 280,000 people were living with the condition in Ghana at the time.
He , therefore, started an educational programme aimed at raising awareness of the condition, pointing out to people that anyone could develop it at any point in their lives, and adding that his wife, for instance, had the condition when she was six-years-old.
He said there was so much superstition about the condition in Ghana that, the moment his wife suffered the attacks, people suggested all sorts of prayer camps. But he told himself the story must change with him.
Mr Larbie said he realised that those pastors were themselves ignorant of the condition, which was why they were misleading people into not taking their medication and into fasting.
“In fact, that is the reason we want to help everyone know that if they have it, it is not a death warrant. Epilepsy is treatable,” he assured.
The Programme Investigator and Project Lead in Ghana, Professor Patrick Adjei, said anybody could get epilepsy at any stage of their lifetime, so nobody should be stigmatised for having the condition.
He said the causes of epilepsy could be many, and one of them is stroke, explaining that one could have a stroke and develop seizures.
Having a seizure is a symptom of the condition. Resources available indicate that everyone is allowed to have one seizure in their lifetime, but that is not epilepsy. It becomes epilepsy when one has repeated convulsions.
The good news, however, is that, according to him, epilepsy is treatable and could even be cured, depending on the cause.
“If we find that you have a brain lesion, we remove it through surgery, and you are unlikely to have attacks. We remove it, and you are technically cured in that respect, which is why it is good that you seek treatment. Even the convulsions that come with the condition, we know that 60 per cent will go away with just one drug,” he said.
Touching on the study conducted in Ningo Prampram and Shai Osudoku, Professor Adjei said the findings from that study and an earlier one in Kintampo had given them a very robust estimate of the number of epilepsy cases in Ghana, which is one per cent of the country’s population, meaning one in every 10 people has the condition in Ghana.
The Mental Health Adviser for the WHO Regional Office for Africa, Chido Rwafa Madzvamutse, said it had been estimated that 70 per cent of people living with epilepsy could be seizure-free if they were properly diagnosed and treated.
Source:
www.graphic.com.gh