CONTENDING WITH SICKLE CELL DISORDER IN NIGERIA
On the seat for the session: ‘Contending with Sickle Cell with DISCON’, we present to you Mrs. Tola Dehinde, a humane Warrior, Advocate, Author, Blogger and Punch Newspaper columnist to share interesting perspectives on Sickle Cell and her life living with it.
Enjoy the interview.
QUESTION 1: Ms. Tola Dehinde, as a Warrior and a household name in the Sickle Cell community, can we know when and how it came to be known you had Sickle Cell? Tell us the events that led to the discovery by your parents.
After my birth, my mother noticed that I cried frequently, and within a few months, she observed that my limbs, hands, and feet would swell. At the time of my parents' marriage, genotype testing wasn't available, nor was there the level of awareness and advocacy around Sickle Cell Disease that exists today. Concerned by these symptoms, my mother, who was a nurse at the time, took me to Great Ormond Street Hospital for Children in London. My parents and I had our blood tested and that was how they found out I had Sickle Cell Anemia.
QUESTION 2: Tell us more about your growing up living with Sickle Cell, academic records, religion/ beliefs and career.
Growing up was relatively comfortable as I was the only one in my family living with Sickle Cell Disease (SCD), which often led to me being spoiled. My mother would insist on feeding me with what she called "food that is good for me."
Like many people living with SCD, my education was affected by the condition, and looking back, I realize that school was never something I truly enjoyed. Despite this, I earned a degree. notwithstanding the challenges of Sickle Cell, I earned a BA in French, followed by a Post Graduate Certificate, as well as additional certifications in marital counselling, a diploma in life coaching, and an MA in Creative Writing. While there have been times when Sickle Cell limited my achievements, there have also been moments when I surpassed my own expectations.
I am a Christian who places her trust in Christ. God is my anchor, and when I reflect on the numerous close calls I've experienced with death when sick, I know that the Holy Spirt has been with me from the very beginning, even from my mother's womb.
Regardless of the challenges posed by Sickle Cell Disease, I have had a varied and fulfilling career. I spent 23 years working at the BBC in different departments, including time as a freelance reporter for the BBC World Service Radio and serving as a career counsellor. Additionally, I have worked as a relationship counsellor and a parenting counsellor; pls various other jobs.
QUESTION 3: You're based abroad. How do you compare the awareness and advocacy for Sickle Cell between your country of residency, the UK, and Nigeria, your home country?
There is significant disparity in awareness and advocacy for Sickle Cell Disease between the UK and Nigeria. In the UK, extensive research is being conducted, with significant scientific efforts underway in the national health service to improve the quality of life for younger individuals and newborns with the Sickle Cell genes. However, from what I've observed in Nigeria, the government has not made similar investments in research.
Given that Nigeria has the highest number of newborns with Sickle Cell Disease globally, one would expect the government to prioritize research into finding a cure, much like what is being done abroad. If Nigeria took the lead in this area, it could attract doctors from other countries to learn from Nigerian advancements, rather than the current trend of Nigerian doctors going abroad for training. Why not position Nigeria at the forefront of scientific research and AI in the fight against Sickle Cell Disease? Or better still look into organic/natural cures.
QUESTION 4: If given a govt portfolio in the health sector, what are the reforms you would effect to bring about changes in the fight against sickle cell in Nigeria?
If I were given a government portfolio in the health sector, I would prioritize ensuring that everyone living with Sickle Cell Disease (SCD) has access to free essential medications. This would include folic acid, penicillin, Paludrine, and vitamin C, all of which are vital for managing the condition.
I would also prioritize research into additive-free, non-chemical treatments. Nigeria is rich in herbs that many people swear by for relieving pain, treating anemia, and more. I would advance research in this area to explore the potential of developing organic tablets, creams, toothpaste, essential oils, gels, pain patches from these natural products, rather than relying solely on laboratory-made medications that doctors are quick to prescribe.
Following that, I would focus on addressing the treatment of leg ulcers, a common and painful complication for people with SCD. It’s crucial to explore both organic/herbal and scientific methods to develop effective cures.
These areas would be a significant focus of my efforts, as finding a reliable treatment for Sickle Cell Anemia iis long overdue.
QUESTION 5: Being the only one amongst your siblings with Sickle Cell, did your parents give you any special attention or preferential treatment due to your health challenge growing up?
Oh yes, they did. I was both indulged and pampered while growing up. I wasn't allowed to do anything strenuous, and I was closely watched. My parents didn’t let me go to friends' homes to play; instead, friends came to ours. Despite the special attention and preferential treatment, my siblings and I grew up with a deep love for one another.
Because I was spoiled as a child, my older siblings would take advantage of it. They would send me to ask our parents for things they knew would be refused if they asked. But since it was me, my parents would often say yes, allowing us, for example, to go out when otherwise we wouldn’t have been permitted.
QUESTION 6: You're the author of a Sickle Cell book "how to live with sickle" and a number of other books. You're also a columnist with the Punch Newspaper on SCD, a blogger and a worker, how do you juggle these tasks, knowing stress is bad for warriors health?
I do not find any of the activities you've mentioned are stressful in any way. I love writing, so anything that involves writing or reading is natural to me. Additionally, anything I do related to Sickle Cell is not a burden because it's a part of who I am. I juggle these various tasks because I’m good at multitasking and an excellent organizer. I know how to pace myself and since I work for myself, I am able to manage my health better.
It’s true that stress isn’t good for anyone living with Sickle Cell Disease, but it's important to understand that there are different types of stress. There’s acute stress, which is short-term; episodic stress, which is short-term but frequent; and chronic stress, which is long-term, like dealing with financial issues or living with a chronic illness such as Sickle Cell. Stress is an inevitable part of life.
However, it’s crucial to avoid certain types of stress, particularly physical, psychological, and psychosocial stress. In my opinion, these forms of stresses can have the most profound impact if not properly managed. Physical stress can often be alleviated by simply stopping the activity, but emotional, psychological, and psychosocial stress require careful management to prevent triggering a Sickle Cell crisis.
QUESTION 7: One of the delibitating complications of sickle cell is leg ulcer which can take forever to heal and comes with excruciating pains. Can you shed some light on it?
The pain from a leg ulcer far surpasses the pain of a Sickle Cell crisis. While I would describe the pain from a crisis as excruciating, the pain from a leg ulcer is mind-blowing. If I had to quantify it, I’d say it’s 100 times worse than the pain from a Sickle Cell crisis.
Medical professionals suggest that leg ulcers are caused by a lack of zinc and insufficient blood flow to the legs. However, certain medications, such as hydroxyurea, can also contribute to the development of leg ulcers. Some people endure this pain for years, which is why leg ulcers are considered chronic.
I’m planning to write a series focusing on the topic of leg ulcers for The Punch newspaper. Do keep an eye out for it in the coming months.
QUESTION 8: Your adorable mother, Mama Dehinde, hit the 90 years mark in July, which you and your siblings celebrated in grand style in Nigeria. Can you share the secret of her longevity with readers?
The secret to my mother's longevity isn't just one thing, but rather a combination of factors. She has a strong faith in God. She is dedicated to charitable works and prays regularly. As a former nurse, she is very mindful and cautious about what she eats. Another key to her longevity is her sociable nature. She has a diverse circle of friends—some older, some her age, some younger, and others who, in Nigerian culture, would be considered sons, daughters, or grandchildren, being decades younger than her.
My mother is also quite internet-savvy, staying up to date with global events. She knows how to use Google for information and is adept at navigating YouTube to listen to news bulletins or watch programs. Additionally, she has been blessed with divine health. I believe it’s these combination of faith, social connections, and mindfulness that has kept her alive and well to this day.
QUESTION 9: Funding is one uphill task for a good number of Sickle Cell NGOs to be truly effective in tackling the disorder, especially in Nigeria, which is the hotbed of the disorder, what would you advise be done to scale the hurdle while avoiding donors fatigue?
The Nigerian government, and African governments in general, do not support non-governmental organizations (NGOs) in the same way that countries in the Western world do. However, I’ve noticed that some NGOs have successfully leveraged social media to appeal for help and support when they need funds which helps avoid donor fatigue.
In these cases, videos or messages can reach a global audience, allowing anyone from anywhere in the world to contribute to the cause. This method is not only efficient but also potentially more effective, as it enables a broader range of people to get involved in a particular donation appeal, without it being the same set of people all the time.
QUESTION 10: What do you wish you’d known about SCD earlier in life that you want others to avoid now?
There isn’t anything I wish I’d known about Sickle Cell earlier in life that I would want others to know now, as I come from a knowledgeable family who provided me with the necessary information while I was still living at home.
However, I do think it’s important for people to understand the significance of a healthy diet in managing Sickle Cell Disease and reducing the frequency of having a crisis. This means eating plenty of in-season vegetables, especially leafy greens. For those from African backgrounds, the traditional stews or soups made with leafy greens are particularly beneficial for people living with Sickle Cell. It’s also crucial to eat fruits in season and incorporate lots of pulses, like beans, grains and peas, into your diet, as well as chicken, fish or turkey instead of meat. If possible, reduce your meat intake and opt for more fish.
Above all, drink plenty of water to prevent the sickle-shaped cells from clumping together and triggering a crisis.
QUESTION 11: One of your areas of SCD expertise is healthy living with dieting, what are the meals you would advise Warriors to consume and why? And what to avoid.
I have mentioned the healthy foods for people living with sickle cell to eat at the previous question. Now in terms of the reason why warriors should consume these foods, it's because eating vegetables is important for health as they provide essential nutrients like vitamins, minerals, fibre, antioxidant, and phytochemicals. Research has shown that people who eat several servings of vegetables a day have a lower risk of many other diseases.
Eating fruits are good source of vitamins and minerals including folate, vitamin C and potassium. They are an excellent source of dietary fibre, which can help to maintain a healthy gut and prevent constipation and other digestive problems.
Pulses and grains are versatile foods that are high in protein and fibre. These edible seeds from leguminous plants great sauce of vitamins as well as minerals too. They are low in fat and high soluble fibre, which can also help lower for list all and blood sugar levels. A single serving of pulses can provide about 1/3 of the fibre that one needs for the day which can help lower the risk of heart disease, stroke, type 2 diabetes and other sicknesses. Grains like wheat and oats can provide similar nutrients, depending on the type of brain and how it's prepared.
Eat fish that are called fatty fish, eg sardines, mackerel, tuna salmon, are a good source of Omega-3, which help reduce inflammation.
Eat beans because they are a high fibre food that helps alleviate constipation by softening your stool. I'm talking about all the different variety of beans available. Beans are also a good source of magnesium which helps ease body and muscle aches.
Eat eggs, the health benefits of eating eggs include that they are nutritious, high in protein, and can support eye health.
Drink milk, it helps keep muscles, bones, nerves, teeth, skiing and vision healthy. Milk reduces sadness and fatigue whilst maintaining healthy blood pressure. And it also supports immune functioning.
Eat nuts, they are packed with fibre, which helps alleviate and prevent constipation. They also help lower inflammation if you have body aches, earaches or itching.
Drink soups and water, as they help keep you hydrated.
Foods that we should try and stay clear of processed meat like bacon, hot dogs, and cold cuts. Sodas, white bread, fried foods, processed food, processed cheese, potato crisps, processed snack foods and hard liquor. If you like any of these foods what you need to do is to find a long-term solution for decreasing them or replacing them with healthier foods and snacks options out there.
QUESTION 12: How often do you have a crisis and how have you been able to surmount them to be in your middle age?
Truthfully, I don't experience crises as frequently anymore. In my middle age, I’ve become much more conscious of what I eat, making sure to consume foods that are beneficial for someone living with Sickle Cell and avoiding those that aren't.
I’ve also learned how to take better care of myself, particularly by understanding what might trigger a crisis. I do my best to avoid infections, and if I do have one, I know which foods to eat to eliminate the infection quickly, as it could otherwise lead to a crisis.
Lastly, I maintain a strong spiritual life, consistently asking God to preserve my health and keep me strong into old age.
QUESTION 13: The myth that Sickle Cell warriors don't live beyond 21 has long been shattered. What do you have to say about the mortality rate today?
I would cautiously say that the mortality rate for newborns diagnosed with Sickle Cell at birth is decreasing. This trend seems more apparent in Europe, but it might not necessarily be the case in Africa. I recently came across a poster from the Sickle Cell Foundation Nigeria that stated, "Do you know that over 150,000 babies are born yearly with Sickle Cell Disorder in Nigeria, and over 100,000 die before their 5th birthday?" This was a poster for a town hall meeting held in August 2024.
If this is the situation in Nigeria today, what about other African countries? It's disheartening to read such statistics about babies born with Sickle Cell Disorder in Nigeria. These numbers clearly indicate that there is still much work to be done in the areas of Sickle Cell advocacy, support, and awareness.
So, when we speak about the myth that Sickle Cell warriors rarely live beyond 21 as being shattered, we must ask — has it really been shattered for everyone?
QUESTION 14: Cancer, Sickle Cell, Malaria, Stroke & AIDS. Banish one and give reason(s) for your choice.
It would have to be Sickle cell or Stroke for me because the other illnesses can be managed or are getting to the point of being eradicated, thanks to medical science and research.
I have spoken extensively about Sickle Cell in this interview. My choice in choosing Sickle cell can be deadly, and every crisis has the potential to lead to death if simple things like not being given oxygen is neglected. Sickle Cell can also lead to so many complications that could become a secondary illness, as one is dealing with the main one. Sickle cell can further complicate one’s disability. An example is Avascular Necrosis affecting one’s mobility or making other areas of one’s joint worse. Lastly, Sickle cell can have a negative effect on other organs in one’s body.
Stroke one the other hand is because it is a serious life-threatening medical condition that happens when the blood supply to parts of the brain is cut off. Stroke like sickle cell are both medical emergencies. For some people especially children living with sickle cell, having a crisis can lead to a stroke.
QUESTION 15: General advice to the readers on health and sickle cell
My responses to questions 6, 10 and 11 would be the advice that I would give readers on health and Sickle cell.
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