Stigma about epilepsy is putting lives at risk, warn UAE doctors

Some sufferers and their families believe condition is a psychological disorder or a spiritual problem that can be cured by clerics.

Social stigma about epilepsy and the mistaken belief that seizures are caused by djinn are putting the lives of sufferers and non-sufferers at risk, doctors warn.

Such misconceptions mean cases often go undiagnosed, preventing patients from receiving the appropriate medical treatment and contributing to an underreporting of the condition.

Doctors also say a lack of regulation on epileptics driving has increased the risk of potentially fatal road accidents.

Experts say they see patients and their families who falsely believe the condition is a psychiatric disorder or the result of religious or spiritual convictions.

A common view, they say, is that epileptic seizures are caused by djinn, spiritual creatures mentioned in the Quran.

“We are now in the 21st century and still patients are being treated by non-physicians and they’re still stigmatised,” said Dr Taoufik Al Saadi, head of neurology at Sheikh Khalifa Medical City (SKMC). “We see this happening quite frequently – they are referred to religious clerics for djinn treatment.”

Epilepsy patients suffer recurrent seizures caused by abnormal electrical activity in the brain.

There are various types of the disorder and seizures can present in different ways, but medical treatments have a high rate of success.

Between 70 and 80 per cent of patients with epilepsy will respond to medication. Other options are available to those medication does not help, including vagus nerve stimulation – in which small electrodes are used to stimulate the vagus nerve in the neck – and other forms of surgery.

But rather than seek such treatment, many sufferers believe their only option is a spiritual method.

A blind man drowned on Jumeirah Open Beach last month after a spiritual healer claimed he could cure the man’s epilepsy by reciting the Quran and exorcising him of demons while he washed in the sea. The man passed out while being submerged by the healer and it was too late to revive him by the time rescue services arrived.

“Because of our traditions, a common conception is that djinn are responsible for the seizures and this is the most disastrous idea,” said Dr Amin Abdullah Al Shawabkeh, a specialist neurologist at Medcare Hospital. “This has nothing to do with religious issues. It is a medical condition with a treatment.”

Dr Iyad Khoudeir, consultant neurologist at Al Noor Hospital and a member of the Emirates League Against Epilepsy (ELAE), said he once encountered a patient who had a heated metal rod placed on his head as part of a traditional practice called Kai.

Dr Khoudeir said there was nothing wrong in asking for God’s help “but you cannot expect a Quran reader to cure you. The first step should always be to seek medical help as soon as possible”.

Because of the stigma surrounding the condition there is no hard data on its prevalence in the UAE.

But based on projected international figures, doctors estimate it affects between 100,000 and 150,000 people in the country.
The ELAE is working with hospitals on developing a system to collect local data. At SKMC, epilepsy accounts for about 300 patients – or 30 per cent of annual referrals – to the hospital's neurology department.

But it is not only members of the public who can have misconceptions about the disease. Even many professional healthcare workers are in need of education.

“A lot of our colleagues, nurses, paramedics don’t know this is a curable disease and don’t make the right referrals,” Dr Al Shawabkeh said. “It should not be confused with psychiatric illness.

“Unfortunately, public and health education is zero. It’s deficient for even our people working in the field.”

Dr Al Shawabkeh said any efforts to educate the public about the condition should include non-neurologist healthcare professionals such as physicians, family doctors and gynaecologists.

“There are many misconceptions and this is partially the mistake of doctors. Making the right diagnosis from the beginning is crucial.”

He said epileptics faced other unnecessary problems in life.

“People don’t want to be associated with an epileptic patient. Many think by marrying one they might have an epileptic child, when really that chance is very small – between 0.5 and 1 per cent. Honestly, this continuous discrimination is disturbing.”

The ELAE held an outreach programme in Ras Al Khaimah last year to educate the public about epilepsy. It is planning a similar event in another emirate this summer.