Our Founder’s Story
I have had epilepsy for almost 30 years. My seizures usually result in rigid muscles followed by violent muscle contractions, loss of consciousness and increased secretions (foam at the mouth). After a seizure, I always have confusion, drowsiness or sleepiness that lasts for 2 hours or longer, loss of memory (amnesia) about the seizure episode, severe headache and weakness of my body for a few hours..
A diagnosis of epilepsy brings along with it a parade of side effects, social problems, and mysteries that are impossible to ignore. During the past 30 years I have had many seizures, with physical injuries such as severe throbbing, bruising, head injuries, a car accident, broken teeth, broken jaw, cut tongue and lip, burns etc. requiring hospitalization and surgery.. Memory problems are among my greatest challenges, which sometimes cause me a great deal of distress. The type of epilepsy I have, the source of my seizures (which start from my temporal lobe, where a large portion of memory is located), as well as the effects of the anti-epileptic medication I take, contribute to my memory problems. I know that my memory problems cannot be cured, therefore I choose to adapt to my memory impairment, making it easier to cope with. I live with the knowledge that my risk of premature death as a result of my epilepsy is high, apparently 20 years less than the general population. I know that I have to be on medication for the rest of my life and live with both the side effects of the medication and with the stress and anxiety about when the next seizure will occur.
However, I have made the decision that epilepsy will not stop me from achieving my dreams and living my life to the full.
I have a child and I am blessed that the anti-epileptic drugs I have been taking to control my seizures have not had any impact on my son’s health. I have completed my MPH (Masters in Public Health) and I work in the health sector. I can drive (though I must follow strict conditions for this to be allowed), and I am involved in many social activities. Of course, all my life decisions have to take my epilepsy into consideration, which sometimes means I have to give up on certain activities.
My attitude is to enjoy the life that God has given me and make a difference while I am still around; this gives me a reason to get up and live each day.
I have to say that I am fortunate to have reasonable control over my seizures, using medication, and I live in the UK where I get good quality epilepsy care. I realize the reality is far different for others and especially those living in developing countries such as Ethiopia, where I grew up. Many of the old superstitions still stand against those with epilepsy; they are excluded from community life, from marriage and from employment, making it impossible for them to live normal lives.
My passion is to be an advocate for people living with epilepsy in developing countries such as Ethiopia, many of whom, with proper medication, would be able to live normal lives. I also want to raise awareness of epilepsy, help dispel myths about epilepsy and encourage people living with this condition, and their carers, to take a more active role in the management of their illness. I believe EVERY person living with epilepsy both in developed and developing countries deserves to get anti-epileptic drugs with fewer side effects, and the economic status of the individual should not dictate the choice of medication he or she receives. Near enough is not good enough! Being an Epilepsy Advocate means I get the honourable task of turning back the page in the History-book of Epilepsy, and I get to contribute by writing the next chapter. I take this as an awesome responsibility and privilege.