Living with epilepsy

Sarudzai Mupangi Features Writer
AT the very tender age of seven, Elizabeth Matare (30) was involved in a struggle that she was not even aware of herself.
It was agonising to watch her struggle as her restless young body would curl up, stretch and jerk as if she was trying to free herself from something.
She would appear to be in serious pain yet she was surprisingly not.

Elizabeth’s elder sister Anna was the first one to notice that something was wrong when she was still very young.
She would physically struggle with an unknown force and froth at the mouth while sleeping.
“It was nauseating yet painful to watch Elizabeth go through the weird episodes,” Anna said.

But she was strong enough to narrate the ordeal to their mother each and every morning.
At first they thought that Elizabeth was probably having a bad dream but when she woke up she had no nightmare to tell.
She did not know what was happening to herself.

To her everything was just fine but not to those who had to go through the pain of watching her struggle through the fits.
Their mother had to take her into her bedroom, and true to Elizabeth’s sister, the young girl started making all sorts of movements that resembled discomfort while frothing on the mouth.

“Were these evil spirits? If it is a nightmare then she has to know what she was dreaming of once woken up in the middle of the fight,” her mother would say.

After disqualifying all suspicions they had, the little girl had to be taken to hospital in case there was a medical explanation to the condition.

The family only found out that it was epilepsy when she was eight years old.
Elizabeth was put on medication but unfortunately she gained weight which made her uncomfortable among fellow schoolchildren.
They would tease her and this negatively affected her studies.

Her medication was changed but her memory was completely wiped out and the once brilliant pupil had joined the league of worst performers.

Her teachers were worried and so were her parents.
The doctors had to try something else and she started taking four tablets spread out through the day and she says life had never been better for her.

“Right now I can work and earn myself a living. The medication that I am taking has no adverse effects like the first two types,” Matare said.
Another man living with the same condition is Pardon Mavhingiri (30), but his challenges are of a totally different dimension.
Epilepsy has seen him suffer a stroke which affected his speech, leg and arm. Sometimes he suffers from serious headaches that he is forced to stay away from work.

Thank God his employers are sensitive to his condition and he is luckily on medication.
He was diagnosed of the condition when he was two. As far as he could remember, unaware of what had happened to him he would always wake up in hospital whenever the attacks came.

Mavhingiri has also suffered from meningitis and would have seizures time and again.
Life has been hard for him.

He could not go to school because of the condition but he managed to get a job as a general hand.
The man hopes to find the love of his life in future and lead a normal life with his family.

Tarisai Mukaro (35), an accounts officer in Harare, said she was disappointed that her condition prevented her from getting a job with the Zimbabwe Prison Services.

“In school I was an active sports person and I do not think it is fair for the uniformed forces not to engage us because of epilepsy because the condition can be controlled just like any other disease,” Ms Mukaro said.

“I was diagnosed of the condition when I was 12 years old. My teacher noticed that my performance in class was deteriorating and she had to summon my parents.

“After going through many tests it was discovered that I had epilepsy but the doctor was against putting me on medication.
“In 2001, when I was 23 years old that is when I had generalised epilepsy where the disease manifests itself in full and I would fall and jerk on the ground. At this stage I was put on medication.

“I now experience the seizures once a month but they would simply end there.”
The bubbly and energetic accounts clerk said she was lucky that she only gets to read about some of the difficulties that people with the condition go through because she did not.

She is a wife and a mother of a happy and healthy family.
Director of the Epilepsy Support Foundation Mr Victor Mugwagwa said the condition manifests itself in a variety of ways ranging from disorderly or prolonged menstrual cycles, recurrent nose bleeding, getting lost in space, forgetfulness, severe chronic headaches among other signs.

He said every person with mental illness, downy syndrome, autism, meningitis, brain cancer and hydrocephalus has epilepsy.
“It is a condition, which affects so many people that the others do not even realise they have epilepsy. This is why I think Government should prioritise the procurement of epilepsy medicines and put in place a disability policy that makes the procurement of the medication a main concern,” Mr Mugwagwa said.

People on the medication are not supposed to default.
Mr Mugwagwa also bemoaned the lack of representation for disabled persons in Parliament saying those with the condition are categorised as disabled.

“In the Senate we only have two representatives, namely Anna Shiri and Mashavakure, and they are not enough to win the fight for us. More should be done,” he said.

“It is my pleasure that about a week ago, President Mugabe ratified the United Nations Convention on the Rights of Persons with Disabilities in New York.

“This is a welcome development which I am sure will benefit the disabled here as Government is now forced to act according to the agreement.”

He said many children had dropped out of school because of the condition which should be a cause of concern for authorities. He said most of the people have to live without their drugs because of the challenge.

“Children with epilepsy are the worst victims of stigmatisation, discrimination, marginalisation and social exclusion in society. Cultural beliefs impress that they are demon possessed or they are spirit mediums (izwethuthani) in the making.

“Some say people with epilepsy die and rise from the dead (izifaifa) when they experience seizures. As society, we must move away from these beliefs and know that epilepsy is a disability that can be controlled through the use of a range of drug therapies,” Mr Mugwagwa said.
He, however, noted that the condition was preventable if people eat a balanced diet, avoid stress and depression. Birth-related challenges also contribute. Only a small percentage is hereditary.

“It takes about 30 to 45 minutes to diagnose someone with epilepsy but the majority of the people cannot afford to be checked by either the EEG or MRI machines.”

It costs US$300 and US$1 500 respectively to have one’s brain checked at local private hospitals. An EEG costs US$170 at Parirenyatwa, US$100 at ESF and it free for those who cannot afford at the same organisation.

The EEG (Electroencephalography) is the recording of electrical activity along the  scalp.
There are only four EEG machines in the country, one at Parirenyatwa Hospital, Anex, ESF and at Bulawayo Central Hospital, while there is one each at the Trauma Centre and The Avenues Clinic

More than 500 000 people in Zimbabwe live with the disease and 80 percent of them are in rural areas.
ESF held the inaugural Disability Wellness Day on September 26 to complement the National Epilepsy Awareness Week which is held the last week of September of every year.

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