Living with epilepsy and a brain tumour

Monday October 8 2018


By Hellen Nachilongo

Saidi Omary, 31, a school teacher, woke up one morning and suddenly collapsed. He lost consciousness for 30 to 45 minutes and when he rose up, he felt tired and his entire body was aching. That’s what marked the beginning of his battle with Brain Tumour-related Epilepsy (BTRE).

He speaks to Your Health while in a hospital bed at Muhimbili National Hospital (MNH). And, that’s where doctors diagnosed him with brain tumour which had culminated into episodes of epileptic fits. But, his illness began quite insidiously.

Before he got to know his problem, he says, “I could fall down frequently. My headache was so persistent, I could feel so dizzy, tired and paralysed.”

“That was, until doctors realised that I had developed a tumour on my left head. Since then, they have been helping me to deal with the challenge. These days, I have improved. I no longer collapse as I used to in the past,’’ says Omary.

The first day I collapsed

“I remember the first time I fell suddenly was in May last year, I was with my friends at home. My friends say it took about an hour for me to be awake. Later, when I became conscious I asked my friends what had happened and why they were surrounding me.”

“One of my friends explained to me that I was surrounded because I had suddenly fallen down and they noticed some white discharge from my mouth…I felt embarrassed.”

He adds, “Within the same week, I fell down again and, when I got up, I asked why I was surrounded by people, I was told the same thing. That’s when I really felt I had a big problem.”

Mr Omary, now a secondary school teacher in Kinondoni District, Dar es Salaam, was working in rural areas. When he realised that he had a problem, he went for check-ups at a dispensary near his home, but he was only given some pain killers.

Told it was only fatigue

“As you know, most hospitals in rural areas do not have equipment to detect some illnesses. So, I was told that it was just fatigue and needed a rest…. I wasn’t satisfied. That’s how I ended up in the city, seeking for specialised diagnosis and treatment,’’ he says.

“I had moved from hospital to hospital…but since specialists operated on me last November, I have not fainted again…I take some medications whenever I get tired and this makes me fail to go to work,’’ he says.

The father of two children currently takes one tablet to help him stabilise and he visits the clinic at MNH monthly.

There is yet another story for Ms Bonita Mpanda, resident of Ukonga Magereza. She also grapples with epilepsy. Bonita came to realise that she had a problem after she suffered frequent headaches and her mouth began twisting on one side.

Like Omary, she went for some checkups at a hospital nearby her but she was diagnosed with malaria. But her condition did not improve even after completing the course of treatment.

A week later she went to TMJ hospital in Dar es Salaam where she underwent Magnetic Resonance Imaging (MRI). That’s when it was revealed to her that she had a brain tumour. She was then referred to MNH for specialised treatment.

“But at MNH, doctors took fresh tests and that’s when they confirmed that I needed to undergo an operation immediately,’’ Ms Bonita says.

Epilepsy in general

However, not all cases of epilepsy are attributed to brain tumours. Some of the causes include brain injury, stroke, brain infections, tuberculosis, birth asphyxia, and genetic disorders such as Down’s syndrome or Alzheimer’s disease.

A neurosurgeon at MNH, Dr Laurent Mchome tells Your Health that epilepsy can affect all people regardless of their sex or race.

“In some people, the symptoms could occur briefly during a seizure. Others could also twitch their arms or legs,’’ he says.

But, he says that when a person gets a seizure, it doesn’t mean that he/she necessarily has epilepsy.

According to other medical sources, there have to be at least two unprovoked seizures for a doctor to diagnose epilepsy.

Dr Mchome says the patients can be treated with medications or sometimes surgery. He says the condition can be controlled in majority of the patients but some require life-long treatment.

Need for public awareness

Dr Wilson Lugano from Muhimbili University of Health and Allied Sciences (Muhas) believes the most important thing when it comes to epilepsy in Tanzania, is on raising awareness. This, he says, would help the society to understand challenges facing people living with the condition.

“Many people, including health care providers are sometimes accustomed to believing that a person with epilepsy must present with convulsions,” says Dr Lugano.

“In Swahili someone would call convulsions as degedege and epilepsy as kifafa. It is said that 40 per cent of seizures are non-convulsive type,” he writes in his column: Physicians Diary.

“So it must be construed that seizure may present in different ways depending on the part of the brain involved and a person’s age. Some seizures can look like staring spells, others can cause a person to fall down, shake and lose consciousness.

What about the BTRE?

For Brain Tumour-related Epilepsy ((BTRE), medical sources say the presence of epilepsy is considered the most important risk factor for long-term disability.

“For this reason, the problem of the proper administration of medications and their potential side effects is of great importance, because good seizure control can significantly improve the patient’s psychological and relational sphere,’’ says a report in the Journal of Current Neuropharmacology, titled: Brain Tumor-Related Epilepsy.

Most patients with epilepsy fail to access healthcare and end up in the hands of traditional healers, says Dr Mchome.

Epilepsy, a global problem

World Health Organisation (WHO) says that 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.

Nearly 80 per cent of the people with epilepsy live in low- and middle-income countries. People with epilepsy respond to treatment approximately 70 per cent of the time, says the WHO. Yet, the World Health Agency says, about three fourths of people with epilepsy living in low- and middle- income countries do not get the treatment they need.

And, it also reveals, in many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.

Is epilepsy contagious?

This is the question that people tend to ask. According to medics, epilepsy is not a contagious disease. And, they say, the most common type of epilepsy, which affects 6 out of 10 people with the disorder, is called idiopathic epilepsy, meaning it has no identifiable cause.

In low- and middle-income countries, about three fourths of people with epilepsy may not receive the treatment they need. This is called the “treatment gap”.

A study, published in Science Direct, titled: Prevalence of active epilepsy in rural Tanzania: A large community-based survey in an adult population, confirms that treatment gap in Tanzania.

“A treatment gap of 68.4 per cent confirms that interventions to raise awareness of the treatable nature of epilepsy are warranted in this and similar populations,’’ says the study published by experts from the Kilimanjaro Christian Medical Centre, Muhimbili University of Health and Allied Sciences in collaboration with those from the Institute of Health and Society, Newcastle University.

“With a low prevalence, however, improved outcomes are potentially achievable for the majority of People with Epilepsy in this and similar populations,’’ emphasises the study.