Triumph over epilepsy after years of agony

Evelyn Makena @evemake_g

Harun Shithe has a warm disarming smile that radiates through his scarred face and wounded lips.

The 10-year-old has suffered myriads of seizures leaving him with deep scars across his face. The second child in a family of four was born in Tana River county with no health complications until at four years when he suddenly fell to the ground and became unconscious for nearly two days.

“For a moment we thought he had died. But seeing him breathe gave us some hope,” his father Ismael Gobu Bune says.

What further bewildered his parents was that when Shithe  woke up, he was weak and could not talk, walk or feed himself. He was completely dependent on others.

Though clueless on what was ailing their son, his parents were grateful that he was alive. However, the fits recurred four years later with greater intensity and frequency until they would occur nearly thrice a day.

The parents, who figured out that their son was epileptic, were hesitant to take him to hospital and instead turned to religion in search of solutions. Every three months, the family would slaughter a goat and pray for his condition hoping he would get healed but nothing changed. If anything, the fits intensified, causing his head to swell, until last year when the Bura town-based family took Shithe to hospital.

Shithe with his father and Cylia Kathambi of Angaza Kifafa campaign outside the Malindi clinic. Photo/ALICE MBURU

However, the first hospital did not have the capacity to handle the case and they were referred to Hola District Hospital.

Regrettably, the family was again referred to a private facility, Tawfiq Hospital, Malindi, but did not have resources  to visit the facility and instead opted to go to Garissa Provincial General Hospital, where Shithe was admitted for 23 days.

He was discharged with medication that lasted a month, but his condition hardly improved.

Shithe’s hope for recovery began in January, this year, after the family visited Dr Eddie Chengo, an epileptic specialist at FPE Epilepsy and Neurology Centre, Malindi, who prescribed appropriate medication.

Chengo, who is also the National Epilepsy Coordination Committee (NECC) vice chairperson, says there are more than 10 types of epileptic seizures and each requires unique medication.

There is no fixed or pre-set dosage in epilepsy treatment, he says, and the prescription has to be individually tailored and adjusted for every patient.

“It is, therefore, important to observe the type of seizure a patient is experiencing. That is why a person who has experienced a seizure needs to be taken to a hospital by someone who has observed him/her and can explain it to the doctor,” he says.

Just like in Shithe’s case, one of the factors hindering proper treatment of epilepsy is the false belief that the disease is untreatable.

The condition can be treated with Anti-Epileptic Drugs (AEDs) and regular checkups by the doctor or a qualified medical professional.

The drugs can effectively control seizures in up to 80 per cent of people suffering from epilepsy and allow them to lead a normal life. Many people can outgrow the condition and enter permanent remission after which the treatment can sometimes be reduced and finally discontinued (only under guidance of the doctor).

After six years of agony and pain, Shithe’s family was able to access an epilepsy specialist through the help of Angaza Kifafa, an annual campaign by NECC. Since Shithe began his treatment in January, he has recorded remarkable improvement.

“This is the first time he has spoken in a long time, he seems more lively and has only gotten two fits since receiving medication from Chengo,” says his father, excitedly.

NECC has been addressing the major issues that affect treatment of epilepsy, including lack of awareness, availability, accessibility and affordability of drugs.

As the country mark this year’s International Epilepsy Day today, the Angaza Kifafa campaign will be officially flagged off in Embu county by Governor Martin Wambora.

Through awareness, NECC hopes to reduce misconceptions on epilepsy amongst communities so that more patients can benefit from available and effective medical treatments.  The prevalence of epilepsy in Kenya is estimated at 20 cases in every 1,000 people.

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