ABU DHABI // Epileptics are facing broad discrimination because of misconceptions about the disorder among employers and the public, health professionals say.
Sufferers are often forced to keep their condition secret from prospective bosses, many of whom fear they are a danger to themselves and colleagues.
Others are unjustly fired when their bosses find out and many have difficulty in finding a job in the first place.
But Dr Taoufik Al Saadi, president of the Emirati League Against Epilepsy, is calling for a national unification of protocol to protect the rights of epilepsy sufferers.
“We are aiming to collaborate all our efforts,” said Dr Al Saadi, who is also head of neurology at Sheikh Khalifa Medical City in Abu Dhabi.
“Patients should have the right to decide whether or not to disclose to their employers that they have epilepsy. Patient confidentiality is very important and they often choose not to inform their employers because they don’t trust them.
“They are afraid – and I think rightly so – that it may be used against them.”
Epilepsy is a disorder of the brain in which patients have episodes where they lose awareness or consciousness.
But patients who have the disorder under control should be able to work in the same way as anyone else, Dr Al Saadi said.
Up to 70 per cent of patients can control it with medication.
They can also learn to avoid triggers, such as lack of sleep. Many have only one episode.
Employers must “take the extra step and ask what form of epilepsy the person has”. They must find out if the disease is under control and whether a patient is taking medication.
“In general, if they have well-controlled seizures then they can lead a normal life like anybody else,” Dr Al Saadi said.
“This is the goal of our treatment, to control their seizures without any side effects to improve their overall quality of life. They should have the right to be promoted like anybody else and should not be discriminated against.
“We have good data that suggests patients with epilepsy are less likely than the general population to be fully employed. According to US data, 25 per cent of patients suffering from epilepsy will lose their jobs.”
The biggest problem is public misinformation on epilepsy, Dr Al Saadi said.
Among common myths are that the condition is caused by devils and can be cured only by a religious healer, and that it is contagious.
“There are still some cultural beliefs and misconceptions about the disease,” Dr Al Saadi said.
Epilepsy can be hereditary, but can also be caused by a head injury, an infection or a stroke. In 50 per cent of cases the cause is not known, Dr Al Saadi said.
He and other neurologists are concerned by the lack of data.
“We don’t have statistics in our region, but based on the data from western countries we believe that prevalence is around 2 to 3 per cent of the general population,” Dr Al Saadi said.
“Incidence, or the number of new cases every year, is 48 per 100,000 population.”
His league is the UAE chapter of the International League Against Epilepsy.
“We at the chapter are busy at so many levels,” Dr Al Saadi said. “Part of our efforts is also to educate physicians, especially in the Northern Emirates.
“We have been very busy especially in the past four years with outreach programmes.”
salnuwais@thenational.ae
