Did You (at Least) Wear Purple?
On March 26th, 2012, many people went purple around the world. Everything started with Cassidy Megan, a young Canadian girl suffering from epilepsy who called on the world to recognize a day to raise awareness on epilepsy.
In the Arab World, many associations organized events to raise awareness about this disorder, especially in Lebanon and in Kuwait. In Kuwait City, the Kuwaiti Society for Epilepsy organized a marathon under the motto “Dispelling Embarassment” on March 24th, 2012, which started from at 9 a.m. from Salwa Sabah Al-Ahmad Hall to the Scientific Center. Right after the marathon, the participants gathered at the Scientific Center to take part in a conference organized to explain what epilepsy is and to give an opportunity to ask questions to a panel of specialists on this matter. The numerous people who participated showed interest asking questions both in Arabic and in English.
In the Arab world, however, there still is a lot of room for improvement, as far as raising awareness on this issue is concerned. Raising awareness about what epilepsy is, is and should be a priority in many countries in the world, as in Kenya. In fact, those affected by it, have to face the local stigmas of the population. Misunderstandings and prejudices about epilepsy are very common in Kenya. Epilepsy is still highly stigmatized in Kenya and many communities believe it is due to witchcraft or curses, that it is contagious, and that anyone who touches the patient or his excreta will acquire the disease themselves. For this reason, as the condition has also been highlighted by some youth that we met, who have epilepsy. Their families are often scared to let other people know about the issue. This is because most people would be scared of them and would keep their distance. Because of this, the family tends to shame the person affected by it. In many cases, students who fell down during an epileptic attack did not receive any help by their teachers or fellow students. Instead, those who witness the attack often run away for of fear of demonic spirits. It is therefore clear that it is a necessity that we raise awareness on what epilepsy is, how to treat it, etc. What is more, many families decide to not even to bring their children affected by epilepsy to the local clinics or hospitals for treatment, so as not to let people know about it. They often prefer to consult with religious or spiritual experts who try to fight the ‘demon’ with certain magical powers.
Talking to a guy in Kenya, he told me that when he was at school, the teacher asked him to leave and not come back because he was scared that the student could infect the rest of the class (or worse, the whole school!) with epilepsy. The teacher was afraid he would have no students to teach and would therefore risk losing his job. This story illustrated that ignorance concerning epilepsy also lies among educated adults, and not only among people from the villages or children and youth.
During a trip to Nairobi, Kenya, in 2011 with the European Journalism Centre, we visited the “Youth on the Move” project, which aims at letting youth with epilepsy get together, share their experiences, and do something to encourage change in their communities regarding the issue of epilepsy. The youth that we met told us about the difficulty that a person with epilepsy has in Kenya with their families and in their schools. We again heard about the stigma about demonic forces and the shame that these children represent for their families. More and more youth however, are starting to open up about their struggle with epilepsy in hopes of better informing people about the situation. They are starting to talk about what epilepsy is, how to cure it, who you can talk to if you have it, and what steps should be taken in order to deal with it. In the beginning it was difficult, the youth said, to speak out in their villages and tell people about epilepsy, but in the end, many people started to ask them questions so as to better understand it and, in some cases to help others who suffered silently from same situation. Youth on the Move also used media, famous national singers, and the choir of the youth of the association to inform and educate people. From what our group heard, the songs and their voices were very nice!
Around the world, including in Kuwait and Kenya, there is still a lot to do. However, the Purple Day on March 26th annually is a good way to raise awareness. I was wearing a purple tie and I tried to talk with my colleagues and friends about what epilepsy is. What did you do?