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I'm Now Seizure-Free

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Like many graduates, Chris Otieno was determined to establish his ground in the trucking world after completing an internship in one of the leading logistics companies in Kenya. At just 24 years, his future seemed so bright. From time to time, he would engage himself in activities that would see him traverse different regions of the country. This equipped him with the much-needed knowledge of places he would most likely get clients. But aside from his dream, Chris was a road rage fanatic. He always loved being behind the wheel and for this reason, his friends nicknamed him "Lanes Bond" after James Bond. But this time, his prowess was on the tarmac, and not in the air.

However, his passion for driving and the dream of becoming a business mogul were almost shattered when Chris was diagnosed with a rare type of epilepsy. This was barely four months after graduating from the renowned University of Nairobi. His diagnosis was different from the common type because this rare epilepsy was medically intractable and partial. This meant that he would still experience multiple types of seizures from time to time even when under medication.

epilepsy clinical trial

Given that the disorder was progressive, Chris could not engage in activities such as driving as this would endanger his life especially if he went into a seizure while on the road. As a result, he became dependent on close friends and family for basic needs. "My life was placed on a standstill. I would rarely go out, and if I did, someone had to accompany me. It was stressful," Chris says.

Back on the campus, Chris was outgoing. He loved football, and for this reason, he was incorporated in the University's football team. It was during an inter-campus match that he suffered head trauma after being accidentally knocked against a goal post. However, he was treated and discharged a week later.

Chris resumed his studies immediately. But weeks later, he started to develop absent seizures. This is a short period where someone seems to be absent-minded by losing awareness of their surroundings and memory. However, he did not mention this to anyone. "Something was not right. But I didn't find it ideal to discuss this with anyone because I thought it was a passing cloud," he says.

As days went by, the intensity and frequency of his seizures increased. Chris was now aware of the fact that he couldn't hide this for long. Together with his family, they sought help from the Kenyatta National Hospital. "I wasn't surprised by the diagnosis. These were things I had experienced before," he says. "But I was troubled because I knew my life would change, and all I wanted was to be myself," he adds. With his condition officially named, Chris could no longer engage in activities that he did before. "He couldn't drive. I had to drive him around or run errands for him," Joy, his elder sister chips in.

His doctor vouched for a seizure control procedure commonly known as Vagus Nerve Stimulation (VNS). This mode of treatment has been in existence for decades. It works by use of a pacemaker-like device that sends stimulation signals regularly to the Vagus nerves in the neck. But even with this treatment, Chris continued to experience seizures. He felt discouraged. "I was trapped in my house. Everyone else was trapped too since they had to watch over me. I just yearned for an end to this," Chris says. "I wanted my family to be free just as I wanted to free myself."

In late 2017, Chris's family decided to seek help from another health facility. Dr. Peter Muya, the lead Neurologist at the Agha Khan Hospital in Nairobi assessed his condition, and after running a series of tests, he recognized Chris as a candidate for a clinical trial that had been shelved for a long time. "We had this procedure waiting for two years because we hadn't come across such a needy patient as Chris," Dr. Muya says. This trial was similar to the treatment he had previously received. However, this one involved the use of an implant in the patient's brain to help locate the exact area where the seizures originated. This stimulation was referred to as Responsive Neuro Stimulation (RNS).

"The RNS device can assess and respond to irregular signals from the brain that causes seizures. With such records, we can then go ahead and address the specific cause of the seizure," Dr. Muya explained. The procedure seemed to be the road to freedom for Chris and his family. But this didn't come on a silver platter. To qualify for RNS, Chris had to undergo numerous tests and long hospital stays to ascertain whether the seizures were originating from a specific area all the time. "I was elated to learn that I was on my way to being seizure-free," Chris says. "I just hoped this would finally work."

By January 2018, Dr. Muya and his team had already established the specific brain foci of the seizures. This was done by performing a stereo electrophalography (SEEG). Spaghetti-sized electrodes were implanted in Chris's brain for this verification. A month later, Chris went into surgery which saw the doctors use mini robotics to implant electrodes inside his brain. The electrodes connected to the RNS device which was enclosed in Chris's skull. "The surgery was seamless. You can't even tell that I have a device inside my skull," Chris says amid laughter.

"I was anxious about my post-hospital life. Days turned to weeks and I hadn't witnessed any seizure. I even questioned whether I truly had epilepsy," Chris says. "With time, I gained the confidence to hang out with my friends and even go back to my favorite activities. My friends were skeptical at first when I offered to drive them. But with time, they got used to it."

"The implant set us free. It has been two years of freedom," said Joy.

     

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This content is for informational and educational purposes only. It is not intended to provide medical advice or to take the place of such advice or treatment from a personal physician. All readers/viewers of this content are advised to consult their doctors or qualified health professionals regarding specific health questions. CenTrial Data Ltd. does not take responsibility for possible health consequences of any person or persons reading or following the information in this educational content. Treatments and clinical trials mentioned may not be appropriate or available for all trial participants. Outcomes from treatments and clinical trials may vary from person to person. Consult with your doctor as to whether a clinical trial is a suitable option for your condition.