- Epilepsy is a non-communicable disease of the brain. Epileptic “fits” or “seizures” occur as a result of an occasional, sudden, excessive electrical discharge from cells in the brain
- It is like an “electrical short-circuiting” or an “electrical storm” in the brain cells
- Epilepsy can result from an injury to the brain, infection in the brain. Many times there is no obvious cause for epilepsy, when it is believed to be due to hereditary abnormalities
West Nile- What does it mean to live well with epilepsy? It means healthy, fulfilled daily living but this is contrary to beliefs and eventual rejection in communities when suffering from epilepsy.
And also it means open, knowledgeable communication about epilepsy at home, at school, and at work. But for a 29 year-old John Omia, a resident of Afere village in Nebbi town council, finding a person he would love, marries and bear children is a tug of war.
“I remember a lot of things in my childhood; I have never really talked much about my life when attacked by epilepsy. It is stressful situation when seizures come and pupils at school would desert you while making fun of you.”
One’s life according to Omia is at the mercy of God and only prays that the seizure does not get you on road. “You can easily get crashed by cars or knocked by motorcycles,” he said.
He also remembers that his first seizure, at age of three almost cost his life when he fell near a blazing fire in the kitchen. He was saved by a mother who was inside a sitting room and heard a loud sound of someone struggling for his/her life. The legs were on top of a heated saucepan, and then the hands spread near the fire.
He then sustained burns on his left leg and right hand. The courageous mother whisked him away from fire. As a first aid, the mother gave him onion to sniff-a strong belief for recuperating seizure, but nothing happened. And 20 minutes later, he regained his senses, he felt like there was a hard slap on his face.
As he grew up and needed to find a lover, he always asked: Can the depth of love be measured for a married couple that suffers alongside one another with epilepsy?
Determined Omia always answered yes an insight of selfless, beautiful and magnificent thing to suffer alongside a husband or wife.
It has not been easy for him when the disease was first detected at the age of six years. Now to Omia, living with epilepsy means dispelling fear and stigma surrounding epilepsy through education and advocacy.
“Living well with epilepsy is an active choice you can make for yourself. If you think about discrimination or fear for people to touch you when you are in seizure, then you can never live longer,” he said.
He is happily married and has three children now. The wife takes care of him when seizures happen. Having epilepsy or caring for someone who does can at times be very challenging.
One time, at a health center, her mother, who was advised to sit out in the waiting room came running back to find him being tortured after seizure in a corridor.
His first dosages of anti-seizure drugs were adult dosages but for a six-year old. “I was having seizures all of the time and often this affected my memory and I always say; “Oh, I’m sorry, I forgot.”
He wanted study Doctorate that deals with brain issues but it is no more. He ended up being a boda-boda rider but earns a decent life.
The head of Psychiatric department at Arua referral hospital, Dr Alex Adaku, said there was need to emphasize the regularity of medication, and clearing the misconceptions, myths, fears, and stigma attached to epilepsy. “There is no specific funding, but we carry out outreach services, provide drugs freely for patients offered by government,” he said.
Dr Alex Adaku of Arua Regional Referral hospital. Photo by Felix.
He also asked the government to help in screening and create awareness message to be spread. According to Adaku the children faced with epilepsy must be allowed to study even when treatment takes long and public should recognize that it is curable disease.
In 2009, about 397 cases were reported at Arua referral hospital. In 2010-2011, over 342 cases were reported. It remains forgotten health problem in most communities.
Another patient at Arua referral hospital, Ms Josephine Adiru, says she suffered more when her parents got divorced. “I ended up going through a lot of heartache and major life changes after that, many that I would not wish for anyone to undergo,” she said.
Although she lived with abuse on a daily basis she thanks God for having controlled seizures during that time. “My memories are patchy at best and time tends to run on in a blur for me since I didn’t really have a sense of time being interrupted constantly,” she adds.
Living a life with epilepsy is not the end because a child or can be turned into an adult after being re-diagnosed and treated properly.
It is a condition not unlike any other such as having diabetes, high blood pressure, or even gout. It is treatable and for the majority, manageable now. What have you to fear? Not a thing.