‘My sickle cell crises were seen as spiritual attacks’

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Makinde Titilayo Ololade-Pearl is the Executive Director and founder of Pearls Sickle Cell Initiative. In this Interview by YUSUF ABDULKADIR, she talks about the challenges faced by sickle cell warriors in the society and efforts in curbing them through her foundation. Excerpts:

W HAT birthed the Pearls sickle cell initiative?

Pearls Sickle Cell Initiative was birthed out of my desire to create a sickle cell enlightenment and support world. It was birthed after I got diagnosed with sickle cell at age 18. The level of ignorance and acceptance of my diagnosis at the time I was diagnosed led me to learn more about the disorder and pushed me further to get a group to create sickle cell awareness and provide support to sickle cell warriors. That group is now grown to what we have now as the Pearls Sickle Cell Initiative. A sickle cell awareness support and Initiative for people living with the disorder.

Do you at some point battle with any health challenges being a sickle cell warrior?

Yes, I do, I got diagnosed with sickle cell after I lost vision in one eye at a later age in life but before then, I had battled severe episodes of pain crisis but all of that was seen more as a spiritual problem. I have had multiple surgeries from different sickle cell complications at different times and I still have and live with the impact of sickle cell complications.

What medical problems are caused by sickle cell disease?

You see, sickle cell is genetic and affects cells inside the body so the sickle cell can affect any part of the body. Name that body part and we can mention complications. Talk of stroke, retinopathy that can cause partial or total vision loss, leg ulcer, avascular necrosis, hand, and foot syndrome – just name it.

Do you have any other thing you do aside from being the founder of the Pearl Sickle Cell Initiative?

Yes, Pearls Sickle Cell Initiative is only a part of the Pearl brand. I am a businesswoman. I run a thriving thrift business – The Pearl and Comfy Thrift stores. A fashion outlet that deals with first-grade female thrift wears. Some of her proceeds from this business go into some activities of the Pearls Sickle Cell Initiative.

Do you think there is any lasting solution to stop the discrimination against people living with sickle cell?

Well, discrimination has been with us for a very long time and we can’t stop it in one day but if we can gradually start by erasing and debunking sickle cell myths. I believe so much that misconceptions are building blocks for stigmatisation or discrimination. People stigmatise sickle cell warriors because of the negative knowledge they have about the disorder. If we all can be equipped with the right information and begin to speak more about the truth and show support to sickle cell warriors who are thriving despite their disorder, then I believe discrimination will be dealt with.

How do you cope with your academics being a sickle cell patient?

Well, for me it wasn’t easy at all. I know me to be a brilliant but stress is a major trigger for my crisis and getting admission to the university was a stress factor. The early years in university saw me visiting and revisiting the hospital which in turn affected me academically but I’m grateful that I got to graduate and I am now able to use my own experience, especially my mistakes, to educate sickle cell warriors so they can manage their academics seamlessly.

Do you consider yourself a conquered sickle cell patient?

I give glory to God. Looking back at how bad I felt at the time I was diagnosed and how I saw life back then to how I see life now, the lessons I have learned, the achievements and recognitions I get today as a sickle cell warrior and advocate, and how I can balance work, marriage, business, and advocacy despite all that sickle cell throws at me (because I still have my share of sickle cell crisis now and then). I can say boldly that I am a conquering sickle cell warrior.

Can Sickle cell disease be wholly eliminated?

The sickle cell may not be wholly eliminated now because we still have people who have not even heard a thing about genotypes, some who have heard do not think it is necessary to take a test. Some for religious reasons, some for love are less bothered about the issue of sickle cell. And the population of people like that continues to pose a threat because they still go on to have children with sickle cell. To end sickle cell, all hands must be on deck. Sensitisation campaigns should be done at grassroots levels with free genotype testing schemes to encourage full participation. Adding the genotype message to primary and secondary school topics is another way to catch them young and instill the message right from their young age. This can in turn lead to making the right decision when it comes to genotype compatibility in the future.

The sickle cell will only be eliminated (maybe not so soon) if we all do our part to end the stigmatisation and preach the genotype message without bias.

Does the government have any responsibility to take when it comes to sickle cell advocacy?

Absolutely! Sickle cell advocacy is only complete when it involves awareness and support. Amazingly, so many of us are creating awareness and doing our best to create support but the government needs to give us policies that support sickle cell warriors and provide support systems for persons with sickle cell, especially in the area of access to quality health care. In a country like Nigeria which is said to be the country with the highest number of people living with sickle cell in the world, Nigeria needs a newborn screening policy to ascertain genotypes and other health conditions from childhood. Provision of insurance covers for sickle cell warriors is another area that should be largely attended to. People fear to go to the hospital and end up self-medicating because of the fear of high hospital bills and we all know the dangers of self-medicating. The government can provide adequate support in terms of insurance cover and payment of sickle cell routine medications under its insurance scheme. So sickle cell warriors can at least have access to their routine medications. The government can also provide a specialized sickle cell center where sickle cell warriors can be well attended to.

What has been your greatest service rendered to humanity?

Apart from the sickle cell support activities, I’m privileged to lead through the support of well-meaning individuals, I would say being able to let go of myself and be vulnerable to help other sickle cell warriors find purpose regardless of who they are. Today, I get so many messages about people who are losing hope or have lost hope and I’m privileged to help them find purpose. Today, I see families smiling because of the work we do at Pearls, which to me is service to humanity- selflessly walking people through the path to finding purpose even with sickle cell.

What message do you have for sickle cell patients out there?

In a society filled with misconceptions and stigmatisation, our mantra as sickle cell warriors should be ‘nothing means anything except the meaning you give to it.’ Above all, you may have a sickle cell but it shouldn’t have you. You’re human first before sickle cell and you can achieve what you set your mind to.

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