Model Sophie Wilson-Smith bravely uploaded a video to Instagram – of what happens when she has a seizure – to create epilepsy awareness…

Young, beautiful and ambitious, the 24-year old veterinary student and model suffered her first seizure in April 2017 but she was only officially diagnosed with epilepsy in 2018 after numerous medical tests.

While some may consider the idea of sharing a seizure online disturbing, Wilson-Smith did it with hopes that it will help raise awareness about the condition.

This kind of radical honesty may be just what is needed to help break the stigma attached to the condition.

It’s time to end the stigma

Although epilepsy is one of the most common neurological diseases in the world, affecting over 50 million people, many people try to hide the condition and don’t get the treatment they need.

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The World Health Organisation reports that, in low- and middle-income countries, about three-fourths of people with epilepsy may not receive the treatment they need.

While partial blame may be laid on low availability of anti-epileptic drugs (AEDs) in some countries, in many communities, fear, discrimination and social stigma have surrounded epilepsy for centuries and made people reluctant to seek treatment.

“It’s time to end the stigma, which can impact on the quality of life for people with the disorder and their families,” says Dr Chris Nathaniel, Medical Head – Specialty Care at Novartis Southern Africa.

He says that studies in both low- and middle-income countries have shown that up to 70% of children and adults with epilepsy can be successfully treated with anti-epileptic drugs (AEDs).

“Furthermore, after two to five years of successful treatment and being seizure-free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse.”

What epilepsy is and what it is not

Epilepsy is not contagious and someone having a seizure is not possessed by evil spirits, as has been believed by some.

It is a neurological condition characterised by recurrent seizures that may include involuntary movements by parts of the body or the entire body.

What causes it?

The most common type of epilepsy, which affects six out of 10 people with the disorder, is called idiopathic epilepsy. It has no identifiable cause.

Epilepsy with a known cause is called secondary epilepsy, or symptomatic epilepsy. The causes of secondary epilepsy could include brain damage, a severe head injury or brain malformations.

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What happens during a seizure?

Seizures can vary in frequency, from as little as one per year to several per day. 

These seizures can be highly distressing for both the person with epilepsy and for those witnessing them 

During a seizure, a person may lose consciousness. Their muscles may relax and cause them to fall down, or tense and cause them to jerk uncontrollably. It is possible for a person to lose control over their bowels or bladder during a seizure. A seizure can also cause what sounds like screaming, as a result of muscles tightening around the vocal cords.

However, not all seizures involve convulsions – even a brief lapse of attention, muscle jerks, rapid eye movements, blinking and staring blankly could also be signs of a seizure.

After a seizure, the person may feel dazed, confused, sad and have trouble remembering what happened. They may also suffer from a headache, or feel unusually sleepy or fatigued. 

Seek treatment

With effective, affordable treatment options available, people suffering from epilepsy need to seek diagnosis and treatment that may be able to control or avoid seizures and minimise the other health impacts of epilepsy, advises Dr Nathaniel.

Patient support groups are also a good way for epilepsy patients to gain emotional support from a community of people with the same disorder and learn about common challenges and how to overcome them.

For information and support for both people suffering from epilepsy and their families, visit Epilepsy South Africa.

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Monday 11 February is International Epilepsy Day 2019.

Sources: World Health Organisation Epilepsy Fact Sheet, University of Rochester Medical Centre Health Encyclopedia: Epilepsy and Seizures, Johns Hopkins Medicine: Epilepsy and Seizures, Mayo Clinic: Epilepsy, Epilepsy Foundation Michigan: Impact on Wellness and Mayo Clinic: Grand Mal Seizure

While All4Women endeavours to ensure health articles are based on scientific research, health articles should not be considered as a replacement for professional medical advice. Should you have concerns related to this content, it is advised that you discuss them with your personal healthcare provider.