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A couple of months ago, I sat with the founder of the Disability and Sickle Cell Organisation of Nigeria, Mr Tayo Faloye, for an interview that has since been published online. Tayo himself is a warrior.
On the seat for the session: ‘Contending with Sickle Cell with DISCON’, Mrs Tola Dehinde, a humane warrior, advocate, author, blogger, and columnist, shared interesting perspectives on Sickle Cell and her life living with it.
I hope you enjoy the interview:
Ms. Tola Dehinde: As a warrior and a household name in the sickle cell community, can we know when and how you were discovered to have sickle cell? Tell us the events that led to your parents’ discovery?
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 the 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 disease.
Tell us about your growing up 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, which 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 realise that school was not 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 postgraduate 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 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 Spirit has been with me from the very beginning, right 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 worked as a relationship counsellor and a parenting counsellor for other companies.
You’re based in the United Kingdom, how do you compare the awareness and advocacy for sickle cell between your country of residency and Nigeria?
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 prioritise research into finding a cure, much like what is being done abroad. If Nigeria took the lead in this area, it could attract doctors globally who would come over 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 investigate organic and natural cures.
If given some govt portfolios in the health sector, what reforms will you 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 prioritise ensuring that everyone living with sickle cell disease has access to free essential medications. This would include anti-malaria tablets, folic acid, penicillin, paludrine, and vitamin C, all of which are vital for managing the condition.
I would also prioritise 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 anaemia is long overdue in Africa.
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. Being spoilt 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 would not have been permitted.
Until next time.
If you would like to get in touch with me about sickle cell, do so, via my email address; [email protected]. And do check out my blog: https://www.dailylivingwithsicklecell.com/ my book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.
