Stakeholders in the fight against epilepsy-related stigma have called on the Ministry of Health to conduct a study on the condition to enable proper planning and support by the organisations fighting the disorder.

Experts in the field argue that there are no clear figures in the country on Kenyans suffering from the disorder.

Dr Vincent Orimba, an expert in the study and treatment of epilepsy says the government does not have statistics. “The figures we have are derived from other countries. As we carry out sensitisation, we need all those with the disorder registered.”

Dr Orimba says a number of those living with the disorder may have had a wrong diagnosis. “The truth is that out of 100 patients, 70 of them will recover within three years should they get the right medication from an expert.”

“The drugs we prescribe are supposed to control seizures or attacks. A patient who doesn’t take the drugs or midway stops medication will get more seizures. We want to know how many epileptic cases we have to ensure that they are all put under medications.”

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Speaking in Kisii yesterday during a sensitization workshop, Epilose Musimbi from the National Epilepsy Coordination Committee said there is a misconception in the region that the disorder is caused by witchcraft.

“We advocate having a more elaborate approach in the handling of the disorder. Correct figures for all those with the disorder will help us plan and even budget for their treatment. This will also save us from losing lives and empowering the sick.”

John Magati from U-Rise Kenya, a Non-Governmental Organization creating awareness on epilepsy, says they are increasing awareness of the disorder as a treatable brain disorder.

“Collaboration among stakeholders focused on individuals with epilepsy is essential to prioritise as a health concern in Kenya. It could be near impossible to create awareness and bring about treatment if we lack statistical figures,” said Magati.

The stakeholders were speaking in Kisii to mark the Purple Day for Epilepsy, a day celebrated every year on March 26 to create awareness of epilepsy.

Epilepsy is a common feature of Down’s syndrome occurring at either a very young age or around the third decade of life.

Experts argue that types of seizures also tend to vary by age. Younger children with Down’s syndrome are susceptible to infantile spasms or tonic-chronic seizures which result in unconsciousness and violent muscle contractions. 

Adults with Down’s syndrome are more prone to either tonic-clonic seizures, simple practical seizures or complex partial seizures with no loss of consciousness.

Almost 50 per cent of older adults with Down’s syndrome will have some form of seizures that are typically less common.