Hi, my name is Oduor Kevin Otieno. I am a caregiver for my brother who is epileptic. When my parents died, I took over the responsibility of taking care of my brother.
I have learnt a lot throughout the journey; the patience, the resilience and the need to wear a tough skin even in the wake of excruciating moments as a caregiver.
I am sharing my story because I believe that through sharing, I can inspire people living with NCDs and also my fellow caregivers. I believe caregivers have a bigger role to play and therefore should be involved in the whole treatment and management cascade for NCDs, especially the less talked about NCDs.
21 July 2022
Epilepsy, the forgotten disease
Despite affecting over 45 million people of all ages worldwide, epilepsy is among the less talked about NCDs. It is a brain condition where nerve cells don’t signal properly, which causes seizures. Doctors diagnosed my brother with epilepsy in the year 2000. They used a special device — a video-electroencephalography — and since he had more than two seizures in the span of one week, they positively diagnosed it as epilepsy. In the medical records which I later accessed, the doctor clearly outlined the treatment regimen and the additional information on the support to be provided to my brother.
At home, engaging in a light chat with my brother who is living with epilepsy. With profound nostalgia, we reminisce over our childhood days. While at it, we talk at length about his condition, the medications and how he has to manage the seizure episodes. Both of us are upbeat that it is manageable.
21 July 2022
Epilepsy and adherence to treatment regimen
Like any other NCD, treatment for epilepsy follows a particular regimen. To control the seizure episodes, patients must follow that regimen, and health care providers must provide support.
Being a caregiver to my brother, this support has been crucial. Working together with the health care workers, we provide professional counselling, medical advice and administration of the anti-epileptic drugs. When needed, I liaise with the health care workers at the dispensary to send him telephone reminders to visit the hospital and get his medications, which are almost always available. If not, they are delivered from a local chemist, though at exorbitant costs.
Together with my brother as we check his next hospital visit. We also check if he has enough drugs that can last him until the next visit.
21 July 2022
With epilepsy comes a myriad of challenges
Healthcare providers and caregivers know that continuous support must be accorded to those living with epilepsy, due to the myriad of challenges they have to grapple with. For most of the people living with epilepsy in my community, access to medication is a huge challenge. While anti-epileptic drugs may be available at the local dispensary, those that require special medication have to dig deep into their pockets. Those experiencing seizure episodes often sustain physical injuries (sometimes fatal), social concerns and dementia, among many other challenges.
Helping my brother to dress up. Being that his left hand is paralyzed, he requires a helping hand to put on his belt. While there are a lot of things he can do on his own, he still requires support in other things such as fetching water from the nearby river, cleaning his room and laundry among others.
21 July 2022
Challenges faced by the broader community of people living with NCDs
With NCD cases rising exponentially, the health workforce is straining. The disproportionate doctor-patient ratio makes it difficult for those living with NCDs to be accorded appropriate medical attention. In many cases, people living with NCDs have to endure long waiting times, which further exacerbates their health conditions. Additionally, in some cases, there is poor exchange of vital information from the healthcare provider to people living with NCDs regarding control, management and requisite home-based healthcare support.
In order to complement the Kenyan government's effort towards addressing NCDs, my organisation, Stowelink, hosts medical camps during which people have the opportunity to screen for hypertension and diabetes. This helps to boost access to NCD diagnostics and reduce the pressure on the healthcare workers.
21 July 2022
A call to action
People living with NCDs grapple with numerous challenges, ranging from lack of access to diagnostics, unreliable healthcare workers and limited social support, to unavailability of necessary medication. I call on the Kenyan Ministry of Health to:
Increase budgetary allocation for NCDs to make medication available and accessible, especially for those living with less talked about NCDs like epilepsy.
Invest in the health workforce to ensure timely service delivery for people living with NCDs. This is a “best buy” for both national and global health, and will reap big returns in improving health outcomes.
Support advocacy activities geared towards creating awareness and sensitising the public on NCDs.
This photo was captured during the third Quality Healthcare Kenyan Awards in 2022, held at Safari Park Hotel in Nairobi. Here I urged all health stakeholders to amplify NCD advocacy. I also urged the health care workers present to improve health service delivery for NCD patients.
NCD Diaries
Caregivers are the first line of defence for people living with NCDs. Even so, they must be meaningfully involved.
Oduor Kevin Otieno, lived experience of epilepsy, Kenya
About NCD DIARIES
The NCD Diaries use rich and immersive multimedia approaches to share lived experiences to drive change, using a public narrative framework.
