Epilepsy and the Erroneous Beliefs of Many Afghans
I am Farhad Amiri1, Co-Founder of Afghanistan Epilepsy Society2 (AES). I'm from Kabul3 in Afghanistan4 and am a Compliance Analyst.
Favourite food: Macaroni
Favourite singer: Moein5
Favourite song: Photograph6 - Ed Sheeran7
Favourite saying: To save one life is to save all of humanity
I do not have epilepsy myself, but I know many others who are suffering from having the seizures. Epilepsy is a serious problem in Afghanistan. Not only does the person suffer from epilepsy, but they also suffer from the fact that society refuses to accept them. Society calls them as crazy or mad. Even the family members don’t cooperate or want to take them to doctors. I have co-founded this organization to raise awareness about epilepsy and to introduce the ways to prevent or decrease seizures.
The main reasons behind the establishment of this organization are as follows:
1. Erroneous beliefs of many Afghans
2. Lack of public awareness
3. Lack of data and statistics about the patients suffering from the seizures
4. Lack of good quality drugs
Although WHO (World Health Organization)9 has taken the action on epilepsy in their plan, yet they have not done anything in Afghanistan. The Ministry of Public Health (MOPH)10 had to take at least the first step towards the public awareness about epilepsy, but they have not done anything yet. They don’t even have statistics on the number of patients with epilepsy. Therefore, there is no reliable source to confirm the number patients with epilepsy in Afghanistan11. However, based on the World Health Ranking12 the number of deaths due to epilepsy Afghanistan is 3.57 per 100,000 people or 1,239 people annually.
The sociological impact of epilepsy upon a person can be devastating. Many people in the rural areas or even in the big cities like Kabul believe that Jinn13 or evil spirits take over a person having a seizure because they are ignorant, afraid and do not know that epilepsy can be controlled by medication. Therefore, they either physically beat the people or take them to a sacred place like a mosque or shrine - which is useless and dangerous. We have many fatal cases where a patient has a seizure and die from injury to the head. People don’t socialize with patients with epilepsy; thinking that they would catch epilepsy from them. They don't know that Epilepsy is not contagious.
Researches indicate that many people in Afghanistan with Islamic beliefs think that epilepsy is a curse from God14. They start praying when witnessing a seizure, or they recommend a relative with epilepsy to see an Imam15. They are reluctant to share their room with a person with epilepsy or marry a person with epilepsy. They are pessimistic concerning the effectiveness of epilepsy treatments.
In November 2018, I heard a very sad story from my colleague. He was talking about his relatives; his whole family was suffering from epilepsy and they had lost two of their family members because of epilepsy. Four other members of that family are still suffering from epilepsy. No one seems to care about people with epilepsy hence I decided to establish the AES (an NGO16) to at least raise awareness about this disorder to save and better the lives of those who are still suffering.
The purpose of the AES is to provide awareness that only medication can help control seizures and be an effective treatment for epilepsy. However, having epilepsy does not mean that the person has an intellectual disability. Because of Epilepsy awareness and acceptance of people with epilepsy, when someone gets a seizure, others will be able to know what to do and what not to do.
With medication and medical care, epilepsy is manageable and a person suffering from epilepsy should be able to live a normal life
Through the AES, families and communities of those with epilepsy can be stronger.
We have many volunteers who are working with us in promoting this idea of caring.
Our slogan is ‘To save one life is to save all of humanity’.
I hope, one day we have an educated Afghanistan.
Farhad Amiri
Afghanistan Epilepsy Society
Co-Founder
E: afghanistan.epilepsy.society@gmail.com | F: AfghanistanEpilepsySociety
