For the first time ever, organizations in the African continent are going to commemorate Stripes Week/Africa Epilepsy Week in September from the 20th-24th. Stripes Week is an initiative that has been launched by Epilepsy Alliance Africa with the aim of raising Epilepsy Awareness. This years theme is Together we will Defeat Epilepsy! During Stripes Week people all over Africa and beyond are encouraged to spread the word about epilepsy by wearing Zebra (Black and White). Epilepsy Warriors Foundation an NGO based in Blantyre, Malawi has started collecting stories from people with Epilepsy from the African continent in a bid to raise awareness and achievements of ordinary heroes.
STORY 1_EPILEPSY WARRIOR _CHIKHULUPILIRO NG’OMBE
My name is Chikhulupiliro Stanley Ng’ombe; I am a person living with epilepsy (PLWE). I was not born with it but it started as a side effect from my cancer treatment. In 1992, I was diagnosed with cancer; I was about 8 years old. I started treatment the same year and 3 months into treatment, I reacted to some of the drugs. The reaction caused bleeding in the brain and the bladder; there was nothing that could be done to control the bleeding in the brain but to wait and watch. By the end of that week, I started convulsing and upon the third convulsion, I was declared epileptic and was put on antiepileptic drugs up to this day.
It was not an easy journey, I had to accept the condition, what made it harder is that I was told that I would have it for the rest of my life even with the medication. The area where the bleeding occurred left damage tissues that eventually left a scar. Secondly, the discrimination, it did not take too long to start, but praise be to God my family accepted this condition with me and it easily became something normal that we could live with and even joke about. Not all understood epilepsy and in some places you could see how people were not comfortable to be around me as if I was a suicide bomber with a time bomb that could explode at any minute and any place. The other major challenge was accessing drugs, we are able to collect free drugs in Malawi but sometimes their out of stock, and this would sometimes leave me without drugs for some days or sometimes weeks.
Living with seizures was hard there where many things I could not do. I could not do, sports, enjoying with friends, I living in an encaged and protected environment, I accepted it but always just desired to live a normal life, but it was necessary for my safety. I have had seizures at school, at work and at church even while singing in front of the church. I have had seizures on the road almost killed by cars; I have had seizures almost everywhere. With the seizures came the embarrassment especially when I urinated on myself. Some kids would just say I faint and it ended there.
I chose to accept the condition, changed my perceptions, and created my definition of normal not as the world sees it but how God sees me. This helped me very much in life as it created a new passion to fight for myself and for others. This lead me to volunteer for some time and work with Federation of Disabilities Organisations in Malawi (FEDOMA) under their epilepsy project as the vice chair of the Blantyre chapter.
My life is a testament that disability is not and inability, it just makes you different. I completed my high school, and then went on further studying computer engineering, worked for eight years in various organisations and positions. I later decided to change my profession to HIV/AIDS Management and before I managed to finish my degree, I started my own NGO that fights against cancer but I never stopped fighting against epilepsy. Now I am the board chair of Epilepsy Warriors Foundation (EWF) ▪