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 facing sickle cell fighters in society and the efforts to curb them through her foundation. fragments:
W AT brought about the Pearls sickle cell initiative?
Pearls Sickle Cell Initiative was born out of my desire to create a sickle cell relief and support world. It was born after I was 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 condition and pushed me further to get a group to create sickle cell awareness and provide support to sickle cell fighters. That group has now grown into what we now have as the Pearls Sickle Cell Initiative. A sickle cell awareness support and initiative for people living with the disorder.
Do you struggle with health issues as a sickle cell warrior at some point?
Yes I do, I was diagnosed with sickle cell after I lost sight in one eye later in life, but before that I had gone through severe episodes of pain crisis, but that was all seen more as a spiritual problem. I have had multiple surgeries for different sickle cell complications at different times and I have and still live with the impact of sickle cell complications.
What medical problems are caused by sickle cell disease?
You see, sickle cell is genetically determined and affects cells in the body, so the sickle cell can affect any part of the body. Call that body part and we can call complications. Talking about stroke, retinopathy that can cause partial or total vision loss, leg ulcers, avascular necrosis, hand and foot syndrome – you name it.
Do you have anything else besides being the founder of the Pearl Sickle Cell Initiative?
Yes, Pearls Sickle Cell Initiative is just part of the Pearl brand. I am a business woman. I run a thriving thrift business – The Pearl and Comfy Thrift stores. A fashion outlet that deals with premium feminine thrift clothing. A portion of her proceeds from this business will go to a number of Pearls Sickle Cell Initiative activities.
Do you think there is a sustainable solution to end discrimination against people with sickle cell disease?
Well, discrimination has been around for a long time and we can’t stop it in one day, but if we can gradually start to erase and debunk sickle cell myths. I believe so strongly that misconceptions are building blocks for stigmatization or discrimination. People stigmatize sickle cell fighters because of the negative knowledge they have about the condition. If we can all be equipped with the right information and start speaking more about the truth and show support for sickle cell fighters who are doing well despite their ailments, then I believe discrimination will be tackled.
How do you deal with your academics as a sickle cell patient?
Well, it wasn’t easy for me at all. I know I’m brilliant, but stress is a major trigger for my crisis and university admission was a stressor. In the early years of college, I saw myself visiting and revisiting the hospital, which in turn influenced me academically, but I am thankful that I graduated and I am now able to share my own experience, especially my mistakes. to train sickle cell fighters so they can seamlessly manage their academics.
Do you consider yourself a overcome sickle cell patient?
I give God the glory. Looking back at how bad I felt when I was diagnosed and how I saw life then to how I see life now, the lessons I learned, the achievements and recognitions I receive today as a sickle cell warrior and advocate , and how I can balance work, marriage, business, and advocacy in spite of all that sickle cell disease (because I still have my share of the sickle cell crisis every now and then). I can boldly say that I am a victorious sickle cell warrior.
Can Sickle Cell Disease Be Eliminated Completely?
The sickle cell may not be completely eliminated now because we still have people who haven’t heard about genotypes yet, some who have heard it don’t think it’s necessary to take a test. Some for religious reasons, others for love are less concerned about the sickle cell issue. And the population of such people continues to pose a threat because they continue to have sickle cell children. To put an end to the sickle cell, all hands must be on deck. Awareness campaigns should be run at a grassroots level with free genotype testing schemes to encourage full participation. Adding the genotype message to primary and secondary school subjects is another way to catch them young and teach the message from a young age. This, in turn, can lead to making the right decision when it comes to genotype compatibility in the future.
The sickle cell will only be eliminated (perhaps not so soon) if we all do our part to end the stigma and preach the genotype message without bias.
Does the government have any responsibility to take when it comes to sickle cell advocacy?
Absolute! Sickle cell advocacy is only complete when it includes awareness and support. It’s amazing that 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 fighters and provide support systems for people with sickle cell disease, especially in terms of access to quality health care. In a country like Nigeria, said to be the country with the highest number of people with sickle cell disease in the world, Nigeria needs a newborn screening policy to identify genotypes and other health problems from childhood. Providing insurance coverage for sickle cell fighters is another area that needs a lot of attention. People are afraid 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-medication. The government can provide adequate support in terms of insurance coverage and payment for routine sickle cell medications as part of its insurance system. So sickle cell fighters can at least have access to their routine medications. The government can also provide a specialized sickle cell center where sickle cell fighters can be properly cared for.
What has been your greatest service to humanity?
Aside from the sickle cell support activities, I am privileged to lead through the support of well-meaning individuals, I would say I can let go of myself and be vulnerable to help other sickle cell warriors find a purpose no matter who they are. Today I get so many messages about people who are losing hope or have lost hope and I am privileged to help them find a purpose. Today, I see families smiling because of the work we do at Pearls, which to me is service to humanity – selflessly helping people find a purpose, even with sickle cell.
What message do you have for sickle cell patients out there?
In a society full of misconceptions and stigmatization, as sickle cell warriors our mantra should be ‘nothing means anything but the meaning you give it’. Most of all, you may have a sickle cell, but it shouldn’t have you. You are human before sickle cell first and you can achieve what you set your mind to.
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