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John developed epilepsy at the age of 11 years.  He had many attacks, suffering injuries and burns.  We live in rural Kenya where epilepsy is highly stigmatised.  We faced a lot of rejection from our neighbours, and before long, word spread like fire.  Soon John was thrown out of school because the parents of other children were threatening to remove their children from the school as they ‘knew’ the disease was contagious. 


I took John to the nearest health centre, which is twenty kilometres away.  The health worker treated him as a case of malaria.  There was no relief and the seizures were now occurring daily and we were desperate and disillusioned.  Friends advised us to seek the help of a witchdoctor as this was not a normal disease.  We tried a witchdoctor, herbalist, and offerings, and when there was no improvement we gave up and just prayed to God to spare our son. 


Then a friend told us about the Kenya Association for the Welfare of Epileptics (KAWE).  After he was started on treatment, and we were counselled, the seizures gradually reduced to a point where he could stay up to three months seizure free.  He was able to go back to school and later enrolled in a Motor Vehicle Mechanical Course.  Life was almost normal for our son: he had a job he loved and seizures once in 2-3 months.  He started saving money to build his own small house.  He later took some time off to start building the house.


Two weeks into the project, and on this particular day, he woke up early, jovial and enthusiastic, and ready for work.  After lunch, he took his medication and complained of feeling a bit tired, and had a headache.  He decided to take a nap on the sofa opposite me. 


He never woke up again!  Never!  He was only 19.  After the shock and disbelief, this has left me with so many unanswered questions.  The last time he had a seizure was a week earlier, it was short and he had fully recovered, happy, busy and enjoying life as never before.  He had no other history of another medical problem.  What could have gone wrong?


Before he was put on medication, when we could watch him helplessly having one seizure after another, we knew his chance of living was slim, but why? how? when everything was going on so well for our son!


John's Mother

Global Conversation 2005

continuing the global conversation

Sudden Unexpected Death in Epilepsy
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