Understanding epilepsy

You’re waiting in line for a bus when the woman in front of you falls to the floor and starts to shake. There’s panic as some people try to bring her round, while others stay well back, afraid of what they’re seeing. For 500,000 people in Zimbabwe, seizures like this could happen at any time. In this special feature, NELSON SIBANDA reports on how lack of specialist care makes epilepsy even more of a danger.

Allet Sibanda: Children with disabilities should be given equal opportunities.
Allet Sibanda: Children with disabilities should be given equal opportunities.

Worldwide, around 50 million people are affected by epilepsy, a condition that’s not curable but can be controlled with drugs and other forms of treatment. More than 80 per cent of epilepsy cases, though, are in the developing world.

In Zimbabwe, most cases are in rural areas, according to a Zimbabwe epilepsy foundation, and the condition becomes more of a danger because the country lacks specialist medical services to diagnose and treat it.

Epilepsy actually refers to diverse set of chronic neurological disorders, usually characterised by seizure.

It is generally caused by an excessive ‘disorderly’ discharge in the cortical nerve cells of the brain and can range from clinically undetectable signs to life-threatening convulsions.

Epilepsy manifests itself in different forms, including forgetfulness, abnormal nose bleeding, prolonged menstruation, some forms of meningitis and brain cancer. For some it’s a lifelong condition.

“The country has no specialist medical staff for treating epilepsy,” said the director of Epilepsy Support Foundation Zimbabwe, Victor Mugwagwa, who added that there were also not enough epilepsy detecting machines such as EEG monitors and MRI scanners.

As a result, people with epilepsy could be wrongly diagnosed Medical sources said there was one EEG machine in the humanitarian sector, private hospitals such as Parirenyatwa-Annexe and Bulawayo had one EEG machine each, and there were only two MRI machines in the country.

Epilepsy can be caused at birth by delays in delivery, practices that injure the baby’s head and abnormal body temperatures, as well as by other complications.

Children affected

Children may be affected with epilepsy at the age of four or five, although adults also remain vulnerable to the condition.

According to Felix Muchemwa, a doctor and advisor to President Robert Mugabe, people with epilepsy may have mental challenges.

“Someone may look epilepsy-free until he starts behaving unusually, such as suddenly gazing into empty space for a while,” said Muchemwa at a recent Disability Wellness Day in Harare.

Muchemwa said to mitigate effects of epilepsy on the poor, drugs should be made accessible to the needy.

UNICEF says it works with other stakeholders such as NGOs and government ministries to try to improve the welfare of children with epilepsy and other conditions.

Initiatives by UNICEF and its partners culminated in the setting up of rehabilitation villages at Harare Hospital and some provincial centres, while plans to have similar institutions at district level are at an advanced stage.

“People with epilepsy are equally human and should not be discriminated against at home and learning institutions,” said UNICEF’s Allet Sibanda, who called on parents and communities to fight for the rights of children with disabilities at school.

She urged the country to enable children with disabilities to take part inb organisations such as the junior parliament.

Drug supplies

Epilepsy sufferer Ebain Zengeni (44) from Harare told The Zimbabwean that he was diagnosed with the condition at the age of 38 and has been on tablets ever since. At the peak of a seizure, Zengeni said he becomes dizzy and forgetful and loses consciousness. One of the dangers epilepsy sufferers is that, during convulsions, they can accidentally bite their tongues.

“After taking the recommended four tablets a day, I feel as normal as anybody else,” Zengeni said.

Drug supplies, however, are only available to registered patients and there’s a concern that most sufferers are known.

A mother of a child with epilepsy, Sibongile Jambaya (38) of Mabvuku, Harare, said children with epilepsy should be treated equally to other children

She described how her child shook violently during a seizure, and was worried that, during an attacked when her child needed help, many people were scared away.

Jambaya said that though she was coping with her daughter’s health condition, some members of the community discriminated against the child. Landlords, for example, sometimes refused to accommodate families with a member affected with epilepsy. And in the worst situations, fathers had been known to abandon a child with epilepsy and divorce the mother.

Jambaya called on government and other stakeholders to set up more schools for children with epilepsy.

Children with epilepsy may suffer developmental delays both mentally and physically. Associated headaches cause absenteeism from school and the extra financial and physical needs create stress and for the family.

To manage epilepsy, doctors have said parents should have drugs handy and give them at the right time. They should also seek medical help quickly if their child behaved in a way that caused them concern.

As well as medical help, some aspects of everyday life can have an effect. Specialists advise parents not to over-protect their children, for example, because mixing with their peers in normal community life can help minimise stress and depression. Avoiding extremes of temperature, and trying to get good sleep, hygiene and nutrition can all help keep epilepsy under control.

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