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Treating epilepsy

Shortage of drugs worrying

| PATRICIA AKANKWATSA | The shortage of medication for the treatment of epilepsy in Uganda is a cause of concern within the Ministry of Health and organisations that cater for patients with the disease.

This was revealed by Charles Ayoo Akiya, the commissioner of non-communicable diseases during the commemoration of World Epilepsy day on Feb 14 at the Ministry of Health headquarters in Kampala.

“We are aware of the shortage of drugs in this country, especially for non-communicable diseases and epilepsy is one of them”, Akiya said.

Sarah Nekesa, the Executive Director of the Epilepsy Association of Uganda said that many health centres around the country have run out of drugs for epilepsy patients who take them daily.

“Having epilepsy, drugs are your daily meal. Once you go off the drug, you will have adherence issues,” she said, “If the issue of short of drugs is left unresolved, the lives of around 2.2m epilepsy patients are at risk.”

According to the latest WHO data published in 2018 Epilepsy Deaths in Uganda reached 1,386 or 0.53% of total deaths. With an age-adjusted death rate of 4.01 per 100,000 of population due to epilepsy, Uganda ranks #20 in the world.

People with epilepsy die prematurely at a higher rate compared to the general population. The most common cause of death from epilepsy is a Sudden Unexpected Death in Epilepsy (SUDEP). For many people living with epilepsy, the misconceptions and discrimination can be more difficult to overcome than the seizures themselves.

Chronic non-communicable disease

The World Health Organization (WHO) describes Epilepsy as a chronic non-communicable disease of the brain that affects around 50 million people worldwide.

It is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.

Dr Richard Idro a paediatric neurologist at Mulago hospital says that seizure episodes are a result of excessive electrical discharges in a group of brain cells.

“Different parts of the brain can be the site of such discharges. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions adding that: seizures can also vary in frequency, from less than one per year to several per day,” he says.

“One seizure does not signify epilepsy (up to 10% of people worldwide have one seizure during their lifetime). Epilepsy is defined as having two or more unprovoked seizures,” he adds.

According to WHO, the Characteristics of seizures vary and depend on where in the brain the disturbance first starts, and how far it spreads. Temporary symptoms occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing and taste), mood, or other cognitive functions.

People with epilepsy tend to have more physical problems (such as fractures and bruising from injuries related to seizures), as well as higher rates of psychological conditions, including anxiety and depression. Similarly, the risk of premature death in people with epilepsy is up to three times higher than in the general population, with the highest rates of premature mortality found in low- and middle-income countries and in rural areas.

A great proportion of the causes of death related to epilepsy, especially in low- and middle-income countries, are potentially preventable, such as falls, drowning, burns and prolonged seizures.

Professor Angelina Kakooza a child neurologist says that Epilepsy is not contagious, although many underlying disease mechanisms can lead to epilepsy, the cause of the disease is still unknown in about 50% of cases globally.

She adds that the causes of epilepsy are divided into the following categories: structural, genetic, infectious, metabolic, immune and unknown. Examples include brain damage from prenatal or perinatal causes (e.g., a loss of oxygen or trauma during birth, low birth weight); congenital abnormalities or genetic conditions with associated brain malformations; a severe head injury; a stroke that restricts the amount of oxygen to the brain; an infection of the brain such as meningitis, encephalitis or neurocysticercosis, certain genetic syndromes; and a brain tumour.

“Seizures can be controlled, up to 70% of people living with epilepsy could become seizure-free with the appropriate use of antiseizure medicines”, she says.

“Discontinuing anti-seizure medicine can be considered after two years without seizures and should take into account relevant clinical, social and personal factors,” she adds.

World Epilepsy Day

According to the Epilepsy Foundation, World Epilepsy Day was started in 2015 and is organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), to provide a platform for people with epilepsy to share their experiences and stories with a global audience. The day also calls for all people to advocate for appropriate legislation that will guarantee the human rights of people with epilepsy and encourage people with epilepsy to live to their fullest potential.

“Despite being one of the world’s oldest known medical conditions, there is public fear and misunderstanding about epilepsy persist, making many people reluctant to talk about it. That reluctance leads to lives lived in the shadows, lack of understanding about individual risk, discrimination in workplaces and communities, and a lack of funding for new therapies research”, says the foundation.

International Epilepsy Day seeks to raise awareness and educate the general public on the true facts about epilepsy and the urgent need for improved treatment, better care, and greater investment in research.

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