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ENTERTAINMENT &SOCIETY WEEKLY EDITOR Ivory Ukonu
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• Agwu
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JUNE 9, 2024 T H E W I L L N E W S P A P E R • www.thewillnews.com
BRAIN TUMOUR SURVIVORS • Orji
I Remain Committed to Raising Awareness of Brain Tumour, Supporting Victims – Chika Okwuolisa World Brain Tumour Day is observed every June 8 to remind the global healthcare community and the world at large of the need for consistent efforts in educating people and supporting those affected by brain tumours. And who better to shed more light on this disease, in this interview with IVORY UKONU, than Engr Chika Okwuolisa who has committed her valuable resources these past few years to raising awareness of this debilitating disease. Excerpts:
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ou are so passionate about raising awareness of brain tumour. What is the story behind this? Thank you so much for this incredible opportunity. It is important to understand that our advocacy isn't limited to brain tumors alone; it encompasses the entirety of our neurological health, though we tend to focus more on brain and spinal cord conditions and emergencies. There's a significant lack of awareness of brain, spine and spinal cord health. Everywhere you look, there's abundant information on how to take care of your heart, eyes and lungs, or how to check for breast cancer or cervical issues. However, it's only recently, thanks to the work we and other specialty healthcare advocates have been doing behind the scenes, that people have begun to consider the importance of their brain and spinal cord health. We live in a cultural and religious society where many people struggle to differentiate between medical and spiritual conditions. Some diseases that people claim have no diagnosis after visiting multiple hospitals and doctors are actually neurological conditions in most cases. The problem often lies in not having healthcare personnel who recommend seeing a neurologist or getting a neuroimaging of the brain and spine. My passion for creating awareness about brain conditions which obviously stems from personal experience was driven by a desire to improve support and outcomes for those affected by neurological conditions. I was exposed to this issue when my younger sister suffered a brain haemorrhage. Being her primary caregiver through five brain surgeries and her survival of two strokes made it clear to me that our entire healthcare system was lagging, especially in neurological healthcare. I had to suspend all other ambitions because I couldn't bear to see anyone else go through what we experienced. How long have you been at this? My sister suffered a brain haemorrhage in 2012, and caring for her through recovery and rehabilitation took almost four years. During this period, I spent a lot of time sharing our story and visiting hospital wards where patients were admitted. I began to notice that many patients lying in hospital beds didn't actually know what they were being treated for, including their caregivers or the people looking after them. Some were unknowingly overdosing on their prescribed medications. I continued this work and much more until 2017, when the burden to help more people became intense. It became clear that this wasn't just about me, but about fulfilling God's purpose. I went on my knees and committed it to God, and in 2017, Brain and Spine Foundation Africa was registered. Since then, I've been actively involved in advocacy, driven by the Foundation's mission to create awareness, enhance understanding and support for neurological conditions. What are some of the projects your foundation accomplished in the past? Well, first off, Brain and Spine Foundation Africa's aim is to advance neurological healthcare and enhance the quality of life for individuals affected by neurological conditions in Nigeria and Sub-Saharan African countries. Our mission includes raising public awareness, providing information, advocating for funding and better treatment options, facilitating access to quality and emergency care, and offering financial assistance to indigent individuals affected by brain and spinal cord emergencies and conditions. Through our work, we have made a significant impact in several areas like in awareness campaigns which have reached thousands of people, helping them understand the importance of early diagnosis and treatment, we organize workshops, seminars, and community outreach programs to educate both healthcare professionals and the general public about neurological conditions, we have established a Patient/Survivor Support Group that offers emotional and practical support to individuals and families affected by neurological conditions. This includes counselling services, support group meetings, and access to resources. Presently, active advocacy for better healthcare policies, funding for neurological research and treatment, for improved healthcare services and greater public awareness about the needs of those with neurological conditions is ongoing. We try to provide financial assistance when we can, to individuals who cannot afford the cost of emergency surgeries and treatments. This support has been crucial in saving lives and THEWILLNIGERIA
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improving the quality of life for many patients.
What challenges did you encounter along the way and how were you able to surmount them? Considering the state of our healthcare system and also the economic situation, we encounter a lot of challenges daily. Top on the list of the challenges is funding. Securing adequate funding for our initiatives has been a constant challenge, limiting our ability to expand our programs and reach more people for extensive awareness campaigns across this country of more than 230 million people. Without enough funding we can’t do much, but we are not giving up. Many people do not understand the importance of brain health leading to delayed diagnoses and treatment. Another huge problem is stigma and misconceptions. In many cultures, neurological conditions are often misunderstood or stigmatized, with some people attributing them to spiritual causes rather than medical issues. We address this by partnering with religious and community leaders to provide accurate information and reduce stigma and also conduct workshops and seminars to educate people about the medical nature of these conditions. There is a lack of access to specialized care. Many patients struggle to access specialized neurological care due to lack of facilities and trained professionals in their areas. We established referral networks with neurologists and neurosurgeons, and we advocate for better healthcare infrastructure. We also provide support and guidance to patients seeking specialized care, helping them navigate the healthcare system. Overall, witnessing the struggles and suffering of patients and their families can be emotionally draining. If funding is difficult, how are you able to keep your work at your foundation going? For a long time, I relied heavily on my engineering company, Hogrago Engineering Co Ltd as well as Okwuolisa assistance from friends and the general public. We also utilized Corporate Social Responsibility airtime on African Independent Television, AIT to seek help. However, recently it has been heartbreaking to watch patients die because we lack the resources to help them. Obtaining projects for my engineering company has become increasingly difficult, and I no longer have the same strength and time to dedicate to both ventures. This is why we are urgently calling on philanthropists and politicians who have amassed significant wealth to consider supporting our cause. Their contributions can make a profound difference in saving lives and improving the quality of care for those affected by neurological conditions. We need their help to continue our mission and expand our reach to those in desperate need. Can you recall an incident that made you reach a breaking point? Unless you understand what neurological conditions entail, it's hard to grasp the
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Okwuolisa constant pressure. Every case, including my younger sister's, has driven me to a breaking point. Currently, the patients in our Patient Support Group waiting for funding for emergency surgeries and rehabilitation are enough to keep me at my breaking point for the next one or two years if we don’t get an intervention soon. I rely daily on the grace of God and His constant strength, which He generously provides. It can be emotionally draining, seeing people who suffer from brain tumour pass away. What is your coping mechanism? Generally, not just for brain tumor victims, neurological emergencies in general. The truth is this, this territory is not for the fainthearted. Some of the neurosurgeons we work with often say ‘Chika is not a ‘normal’ human being’. So, it’s just by the grace of God and my coping mechanism is rooted in gratitude. I am thankful to God for the privilege of being part of their journey during such difficult times. This perspective helps me find meaning and purpose in the work we do daily, despite the emotional toll it takes. This is a lot. Were there times you felt like giving up? And what motivates you to keep going? Absolutely. No one can undertake this work without divine support. Countless times, I have felt like giving up, but each time, God reminds me why I started and that this mission is not about me. One of my coping mechanisms is to incorporate laughter into my routine, because there are days when there is nothing to laugh about. The challenges can be overwhelming, but the resilience and courage of the individuals we support inspire me to keep pushing forward. Whenever I remember that someone, somewhere, might be experiencing a brain emergency with a higher chance of dying than surviving, and no emergency number to call or ambulance to expect, I am driven to continue. When I think about a family member caring for a loved one with a brain injury,
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