Epilepsy is a neurological disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations and sometimes loss of awareness
Kampala, Uganda | THE INDEPENDENT | For over five years, Maria Nakiwala has been taking four tablets daily to keep her epileptic episodes in control. Nakiwala says that before she found treatment, she had spent millions seeking the intervention of witch doctors in her condition which she initially thought were demons.
Nakiwala who still has visible scars on the face due to falls or seizures associated with the neurological disorder lives in constant fear of the repeat of the same. She never misses her drugs although she now says her life is threatened by constant stock-outs.
At Wakiso health center III where Nakiwala picks her refills, the medicines have not yet been stocked to date. She says that when she visited the facility, health workers asked her to check with them again next Monday.
Without the free government drugs on the essential medicines list, epileptic patients have to pay about 500 Shillings per tablet and yet require up to four tablets each day. This is unaffordable to many and as a result, some clients had to go without treatment from May to September when facilities across the country suffered stock outs.
According to Sarah Nekesa, the Executive Director of Epilepsy Support Association of Uganda (ESAU), they decided to bridge this gap.
Currently, they are supporting up to 20,000 people with free medical supplies throughout the country in an initiative they refer to as drug banking.
She says the idea of having free drug banks set up at different Private Not for Profit Health Facilities across the country came after stories of people missing their treatments due to stock outs started piling. They have up to 30 of such banks.
According to Prof. Angelina Kakooza, a consultant neurologist and researcher based at Makerere University, having people living with the condition consistently on treatment is the only sure way for guaranteeing their good quality of life.
She notes though the disease is still met with a lot of superstition and stigma that many of the sufferers do not come out to seek care.
Officially, ten in every a thousand people are estimated to be living with the condition which manifests by shaking, sudden falling and foaming on the mouth of the sufferer, and inability to control bowel among others where someone gets no memory of the experience after that.
In their latest estimates of the survey whose results are not yet released, the researcher says the prevalence of the disease is at about 2%. Depending on an assessment by a doctor, the expert says a client will be told whether they can stop medication at a certain, although she adds most of the time medication is life-long.
However, as a precautionary measure, apart from accidents that injure the brain, experts warn people against consuming poorly prepared pork as the raw meat contains cysts that multiply in the brain causing epilepsy.