VERY few people in the world would think of coming up with an immediate solution to manage their situation after being afflicted by a chronic illness. According to the World Health Organisation (WHO) around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
Bright Bwalya, a Zambian youth, who is among the millions fighting epilepsy, has come up with a device called Seizure Assistant which allows patients to call for help when they are in need.
Bwalya believes that the Seizure Assistant will help in the provision of proper first aid to patients and educate the general public about epilepsy. He says the device will also help to eradicate myths and fight the stigma surrounding epilepsy.
Bwalya has come up with mobile phone-based health management and experience-sharing platform that also allows patients suffering from epilepsy to get help in times of need. The help can be requested either by an app-button push or auto seizure detection using a synchronised smart wrist band.
The application then calls for help by sending a preset save our souls (SOS) message to pre-set emergency contacts, alerting them that the patient has just had a seizure.
The patient’s location is included in the message for easier tracking. In addition, the patient’s phone plays an SOS sound to attract the attention of the people around.
Whoever picks up the noisy phone will find a series of instructions on how to provide first aid care to the patient experiencing the seizure, their name, condition type and emergency contact details. Through the app, users can learn about seizures, what causes them, what types exist and the myths around them.
Other features include medication intake and replenishment reminders sent to set emergency contacts as well. Bwalya explains that the device has a patient interaction, publicly or anonymously allows those who are not yet comfortable to speak about their condition, a platform to ask questions and get answers, or give answers to those asking on the platform.
Patients can also join support groups, a platform to encourage or be encouraged. They further can book sessions with counsellors and learn condition management from those sessions and content on the platform that provides information daily, alongside management tips.
A patient can also order SOS medication and have it delivered in a time of need. According to Bwalya, expectant women too can also learn how to manage a pregnancy while taking seizure medication, rare information. Bwalya was recently awarded K250,000 by the National Science and Technology Council under the Science and Technology Innovation Youth Fund (STIYF).
Bwalya is the third born in a family of seven. He was born in Mufulira on the Copperbelt while the family stayed in the rural parts of Mufulira called Kwa Zimba. The soft-spoken youth started his first grade at Wesley Nyirenda Primary School, where he only learned for two terms before the family relocated to Mansa.
In Mansa, he was enrolled at Mutende Basic School which accounted for his grade one term three and was moved to Our lady of Mercy school where he did grades two and three before the family moved to Kafue district. It was at a phase in life that curious innovative Bwalya’s moulding began. “My passion for innovation grew from the shows I watched frequently while in fourth grade.
While my friends watched cartoons, my father introduced me to channels like Discovery on DStv, where I watched shows like, How it’s Made, Big, Bigger, Biggest, Breaking Down the Biggest,” Bwalya explains.
The programming made him love technology and innovation as they promoted it and showed him that technology was a part of everyday living.
“My love for it became apparent in how I wanted to fix any gadget in the house and my curiosity for how the car worked at a very young age. This car curiosity led me to teach myself how to drive a car in grade 8,” he said.
After a trip to Kenya where technology was and is at a fast-growing pace, Bwalya’s father recommended that his son pursue a degree in Information Technology at the Copperbelt University (CBU) in Kitwe.
“Indeed, my father was right, I loved what I did and I pursued it passionately. Life at CBU came with newly found talents and skills such as on stage spoken word poetry, which I used to share God’s Word, basketball, my exercising game and evening straws, my relaxing activity,” Bwalya says.
He recalls that time on campus was an amazing walk in the park until he was met with a hurdle in March of 2016. “I started experiencing seizures which people didn’t understand and sadly, the doctor could not explain even though I had suffered one in her office during my first session. But curious me needed to know what was happening, and after some disturbing activities which seemed to precede a seizure, I decided to prepare my computer camera and recorded myself having a seizure, and from there my research began.
I discovered I was experiencing simple partial seizures,” Bwalya explained in an interview with the author. He notes that this brought a massive change in his life, from quitting some of his favourite activities like basketball to fearing the possibility of suffering a seizure. “I lost my then-girlfriend and several friends because I was rarely outside and some just couldn’t visit. I became a victim of mockery and stigma on campus after the few seizures I suffered publicly on campus.
“After going through all this, I decided to change my final year dissertation and innovation from one recommended by my supervisor to one centred around convulsive disorders.
“I named the application “Seizure Assistant” – you can see it explained at: https://seizure-assistant-dev.netlify.app/,” Bwalya adds.
He said in his way, he was carrying out his schoolwork, while learning about what he was suffering from.
However, another problem arose; a year’s delay in my degree study, I was not allowed to present my project because a lecturer couldn’t believe I was unwell hence the need to go to the hospital on Wednesdays to see a doctor, even though hospital documents were presented to him,” he said.
“I learnt how to take care of myself, this inspired me to start advocacy work hoping to help someone who may be struggling or just ignorant about this condition,” Bwalya said.
He said Seizure Assistant was featured on ZNBC’s ZedGenius Television programme and was among the top 10 out of 600 innovations in Zambia which were graded by Zambia Information and Communications Technology Authority (ZICTA) during the Young Innovators Competition in 2018.
Bwalya is happy that his advocacy works have led to radio, television, and in-person discussions. He has won several accolades at both local and international levels.
“The UTH Wednesday Talks have yielded a lot of great results, the recognition of which has earned a Golden Light Award and certificate and Trophy from the International Bureau for Epilepsy (IBE). Another award has been from the Epilepsy Alliance Africa; with podcasts from interviews with the International League Against Epilepsy,” he said.
Bwalya is hopeful that many lives will be impacted by his innovation and the counselling and advocacy works he has religiously embarked on. According to the WHO, nearly 80 per cent of people with epilepsy live in low and middle-income countries.
Epilepsy is a chronic Non-Communicable Disease (NCD) of the brain that affects people of all ages. A person with epilepsy is not contagious and cannot give epilepsy to another person. Medical experts say epilepsy is a disorder of the brain that causes seizures. These seizures are not caused by a temporary underlying medical condition such as a high fever. Epilepsy can affect people in very different ways. This is because there are many causes and many different kinds of seizures.
Some people may have multiple types of seizures or other medical conditions in addition to epilepsy. These factors play a major role in determining both the severity of the person’s condition and the impact it has on his or her life. The way a seizure looks depends on the type of seizure a person is experiencing. Some seizures can look like staring spells.
Other seizures can cause a person to collapse, shake, and become unaware of what’s going on around them. Epilepsy can be caused by different conditions that affect a person’s brain. Many times the cause is unknown.
The Centres for Diseases Control and Prevention (CDC) explains that some causes of epilepsy include brain tumours, traumatic brain injury or head injury, central nervous system infection and stroke.
Story by: By JOWIT SALUSEKI