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. A chat with Chika Okwuolisa
You 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 on 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 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 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 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, without any hope of comprehensive rehabilitation, and the higher chance that the caregiver might die from stress and frustration before the patient, I am compelled to persist. Each time I recall someone receiving a devastating diagnosis of a brain tumor or aneurysm and having no hope of emergency life-saving surgery due to financial constraints, I am motivated to keep going. Many patients and families face these situations helplessly and hopelessly, unable to continue because they are exhausted emotionally, physically, psychologically, and financially. These are the realities that fuel my determination to never give up.
For the benefit of many who know next to nothing about brain tumour, could you explain in a layman’s terms what it is and why it is important for all to take this seriously?
A brain tumor occurs when cells in the brain begin to grow uncontrollably, forming a mass of abnormal cells. These tumors can be classified into two main types: primary and secondary. Primary Brain Tumors originate within the brain itself. They can be benign (non-cancerous) or malignant (cancerous). Examples of primary brain tumors include gliomas, meningiomas, and pituitary adenomas. The exact cause of primary brain tumors is often unknown, but genetic factors and exposure to radiation may increase the risk like I mentioned earlier. Secondary Brain Tumors also known as metastatic brain tumors occur when cancer cells from another part of the body spread to the brain. Common cancers that can metastasize to the brain include lung, breast, kidney, and melanoma (skin) cancers. Secondary brain tumors are always malignant. Indeed, brain tumors are a serious concern due to its impact on brain function. Remember that the brain is the control centre of our body. It controls critical functions such as thought, memory, movement, and sensation. So, tumors can disrupt these functions, leading to neurological deficits. Symptoms of a brain tumor can vary widely depending on the tumor’s location, size, and growth rate. Common symptoms include persistent headaches, nausea, vomiting, vision problems, changes in behavior or personality, and difficulty with balance or coordination. Early detection and diagnosis are crucial for effective treatment. Treating brain tumors is challenging due to the brain’s delicate and complex nature. The prognosis for brain tumor patients can vary greatly. Benign tumors may be successfully treated and have a good prognosis, while malignant tumors can be aggressive and difficult to treat. Quality of life considerations are paramount, as treatments can have significant side effects. Increased awareness about brain tumors can lead to earlier diagnosis, better treatment options, and more support for patients and their families. Being aware of the symptoms and seeking medical attention promptly can lead to earlier detection and better treatment outcomes. Understanding brain tumors helps in providing better support and resources for those affected. This includes emotional, psychological, and financial support. In summary, brain tumor is a serious medical condition that requires attention and awareness.
Is there a cure for brain tumour? Are there preventive measures?
Since it’s World Brain Tumour Day, this June 8. Let me dwell on it for now. There isn’t a universal cure for brain tumors, but treatment options have significantly advanced. These options include surgery, radiation therapy, chemotherapy, targeted therapy, and immunotherapy. The effectiveness of these treatments depends on the type, location, and stage of the tumor, as well as the patient’s overall health. In some cases, especially with benign tumors, a combination of treatments can lead to a complete cure or excision. While there’s no guaranteed way to prevent brain tumors, because it can happen to anyone, even babies, meaning it could be congenital, some measures may reduce the risk. Things like limiting one’s exposure to radiation and certain chemicals known to be associated with cancer risk, maintaining a healthy lifestyle, avoiding smoking, regular medical/neurological check-ups can help in the early detection allowing for timely intervention. While these measures can help reduce risk, it is important to note that brain tumors can still occur due to genetic and environmental factors beyond our control. Continuous research is essential to better understand brain tumors and develop more effective treatments and preventive strategies.
In what ways can people support the incredible work that you do?
I breathe Nigeria. I go to bed thinking about Nigeria, and I wake up thinking about Nigeria. I don’t dwell on problems; when I see one, my immediate thought is, ‘How can this be solved?’ To make a meaningful impact, we need an investment of hundreds of billions of naira. So, people’s substantial contributions can save lives, provide emergency services, and help us bring to life our dream of a Non-profit Comprehensive Rehabilitation/Awareness Center/Institute for patients affected by neurological conditions. Businesses can partner with us through corporate sponsorships and Corporate Social Responsibility (CSR) initiatives. These partnerships not only provide essential funds but also help raise awareness about our cause within the corporate community and beyond. We will appreciate support from philanthropic foundations and grant-making organizations. This can enable us to launch new projects, conduct vital research, and reach more individuals in need. We also call on Survivors of some of these neurological emergencies to come on board and participate by sharing their stories and helping to organize large-scale fundraising events like it’s done in the developed world. Donations of medical supplies, equipment, cars, emergency vehicles, rehabilitation equipment and other resources can help reduce our operational costs and ensure that more funds are directed toward patient care and support service. Skilled volunteers, and networking partners who can advocate for our cause, spreading the word, and connecting us with potential donors and partners are welcomed. We are calling on individuals and entities with the capacity to support us to come on board. Together, we can make a significant difference for our people and bring neurological healthcare to the forefront. Let’s make it happen.
Do you think enough is being done at the national level in terms to raise awareness of brain tumour? How best do you think government can get involved?
No, not enough is being done at the national level to create awareness not just about brain tumors, but neurological emergencies as a whole. The truth is, we have a long way to go, and the government cannot solve all our problems. From my perspective, addressing brain and spinal cord health is unlikely to make it onto the government’s agenda in the nearest future. That’s why our organization is dedicated to filling this gap. The most impactful way to support us is through significant financial donations. In the developed world, billions of dollars are set aside yearly for brain and spinal cord treatment and research. Here, however, these issues are often overlooked and not prioritized on the national agenda. The government can get more involved by allocating funds for public education campaigns, enhancing hospital capabilities, especially theatres and equipping our ICUs to effectively handle neurocritical cases, develop strategies to mitigate the brain drain of healthcare professionals specializing in neurological care, ensuring adequate staffing and expertise in hospitals and clinics, allocate funding for research into neurological conditions and support initiatives aimed at advancing treatment options and outcomes. Create dedicated funds to provide financial support for patients facing the high costs of treatment and rehabilitation for brain and spine injuries by establishing a Brain and Spine Injury Trust Fund. Finally, establish robust emergency response systems tailored to neurological emergencies, including efficient ambulance services and streamlined hospital protocols.
You seem to be a ‘one man army’ in your advocacy work. Have you tried to seek co-operation or partnership with government?
While the advocacy work can sometimes feel like a one-person effort, considering it’s a pioneering organization for issues like this in Nigeria and Africa, there is no doubt that the scale of our mission surpasses what any individual or even an organization can handle alone. We have actively sought cooperation and partnership with the government, and we are registered partners with the Federal Ministry of Health. However, the impact of this partnership has been limited so far. We often encounter scepticism and questions like, ‘Chika, the Government is still grappling with malaria, typhoid, TB, maternal health, etc; where will resources come from for brain and spinal cord issues?’ Instead of being discouraged by these challenges, I remain committed to taking each day as it comes, trusting that in due time, our efforts will be recognized and supported. We are also a registered partner with the Ministry of Budget and Planning.
You recently won the Dr Mark Sims Award for Public Service at the University of Leicester Alumni Awards event. How do you feel about this award and more importantly, getting recognised for the amazing work you do far away in the United Kingdom?
Winning the Dr. Mark Sims Award for Public Service at the University of Leicester Alumni Awards is an incredible honour. I am deeply humbled and grateful for this recognition. It is truly inspiring to know that our work is acknowledged and appreciated from far away in the United Kingdom. This award is a testament to the collective efforts of everyone involved in our mission to improve neurological healthcare in Nigeria and Sub-Saharan Africa. It motivates me to continue pushing forward, knowing that our efforts are making a difference and are being recognized on an international level.
Again, you were also recently recognised by the Lux Terra Leadership Foundation. What is the award all about and why do you think you were singled out amongst the few who got this recognition?
Being recognized by the Lux Terra Leadership Foundation alongside other notable Nigerians is a profound honour, and I accept this recognition with great humility. This award celebrates the unmatched depth of compassion that I invest daily in helping strangers. One story that particularly stood out and contributed to this recognition is that of Onyinye, a young 23-year-old girl who became paralysed from a spinal cord tumour. Her parents, guided by their pastor’s belief, were convinced that undergoing the recommended surgery would lead to her death. They attributed her sudden paralysis to a spiritual attack. However, driven by my absolute faith in Jesus Christ, knowing fully well that I didn’t embark on this journey on my own. I have a divine backup, I challenged them to allow me to help their daughter, promising to take full responsibility for the outcome. I successfully raised the millions needed for her surgery and have been overseeing her rehabilitation and recovery ever since. Through God’s grace, we have achieved the unthinkable, and Onyinye’s story is just one example of the miracles we have witnessed. My honesty, compassion, and unwavering faith were recognized by the Lux Terra Leadership Foundation, and I am deeply humbled by this acknowledgment.
How do you find the time between advocacy and running your engineering firm to compete favourably?
Balancing advocacy, my role as an engineer, and running my engineering firm is incredibly challenging at the moment. The demands are overwhelming, and I wouldn’t wish this situation on anyone. Typically, my company partners with others who secure projects, and depending on our agreement, I either receive a commission or pay them one. This setup allows me to navigate the demands of advocacy while striving to maintain a competitive edge in engineering.
What is the most important lesson you have learnt since becoming an advocate of brain tumour?
It is the power of resilience and compassion. It has taught me the critical importance of empathy, understanding and unwavering support in the face of adversity. Additionally, I’ve come to realize the profound impact of education and awareness in destigmatizing neurological conditions. Many people still lack basic knowledge about these conditions, which often leads to delayed diagnosis and inadequate treatment.
What do you think must have significantly shaped you to be who you are today?
Compassion has always been a natural part of me. It’s a quality that didn’t require cultivation but was deeply ingrained in me. This innate compassion was the driving force that led me to put my life on hold for nearly five years starting in 2012, as I dedicated myself to nursing my younger sister back to health following five brain surgeries and two strokes as a result of a brain haemorrhage. This transformative experience profoundly shaped my perspective on life and purpose. It taught me the immense power of empathy and selflessness in making a meaningful difference in someone’s life. Then there is Victoria, who survived five brain surgeries and a stroke. She is my direct responsibility by choice. Alongside her, I also care for Dozie, my parents’ youngest, who has schizophrenia (a condition I also try to make out time to share awareness about and discourage stigmatization). Since my mother’s passing, I have taken on the role of supporting him personally. I believe that fostering compassion within ourselves and others is crucial for creating a more compassionate and supportive world.
What else do you do besides your advocacy work and running your engineering firm?
I am deeply involved with Samaritan Ark Global Foundation. This organisation focuses on promoting peace and conflict resolution through compassion. Presently, we are involved in the Climate Peace Hub project in Northwest Nigeria being funded by UNDP. It provides a platform for me to extend love and kindness to marginalized groups, including orphans, displaced people and widows. Through Samaritan Ark Global Foundation, I am committed to fostering a more harmonious and caring community, addressing social challenges with empathy and practical support.
How best do you unwind?
Despite the limited time I have, I prioritize fellowship with God, regular exercise, and visits to a good spa to take care of my body. I believe in respecting and caring for my physical well-being. I eagerly anticipate having more opportunities to unwind fully, travel, and engage in recreational activities.
Credit: The Will
