"I don't care about things like that; I just need more people to be aware."
Singer Adekunle Gold has recounted the online backlash he faced when he first opened up about his struggle with sickle cell disease.
Sickle cell disease is a genetic disorder that affects red blood cells, causing them to take on a sickle shape. This blocks blood flow and leads to pain, fatigue, and other complications.
The 37-year-old singer detailed his struggle with sickle cell disease in his 2022 single '5 Star'.
During an interview with CNN correspondent Larry Madowo on African Voices Changemakers, the 'Orente' crooner said he was attacked and bullied on social media.
He said: "They call me a sickler. When I talked about my struggle with sickle cell in the song '5-star,' I saw a lot of tweets from people attacking and abusing me. I'm speaking about sickle cell disease now because I've finally gathered the courage to come out and speak openly about it. Many people can't share their stories like I can. While writing the song '5 Star' and reflecting on my life journey, I realised I'm a miracle.
"I just thought about it, how 'sickle cell was a crisis for me.' It was a tough time, and I was reflecting on that song. I thought maybe it was time to let my voice be heard. People are dying; people are going through it. All my life, I've had to deal with this disease that I inherited, and then you're even trolling me for it. People don't even understand these things. I don't care about things like that. I need more people to be aware. I'm striving to raise awareness and support those with the disease."
The singer, who rose to fame after the release of 'Sade', said he has been aware of his diagnosis since childhood.
The father-of-one stated that despite knowing about his condition, he frequently put himself in situations that made him ill, decisions that he said had a significant impact on him.
He said he made those decisions because he didn't want the disease to define him, though he acknowledged that it came with consequences.
"They tell me you have sickle cell; you can't play football in the rain like your peers. I'm like, no, I want to play. I've always been rebellious. I knew all my life because I had a crisis every time I was growing up.
"I had a crisis every time I was in the hospital, back to back. It affected me greatly because I'm not supposed to be in the rain. So what happened to me was I would have pains in my joints from being in the rain, for example, doing strenuous activities as a child that I was not supposed to do," he noted.
Winning the battle
The singer added that he triumphed over the pain by exercising, taking his medication, eating well, resting, and staying hydrated.
Adekunle Gold recounted an experience on a plane when he neglected to drink enough water, unaware of its importance.
"One time, while on a plane, I wasn't aware of the importance of drinking plenty of water. Consequently, I didn't hydrate enough, as it didn't cross my mind. Upon landing, I encountered the most challenging crisis of my life, a sensation I felt deep in my stomach," Adekunle Gold said.
According to the singer, his regular pains were in his joints and hands. He said that he could avoid the pain because he had access to drugs, treatment, and counselling, among other privileges.
The Lagos-born singer noted that his social media experience made him know many people were unaware of the disease.
"Now, consider those who lack access to and cannot afford necessities for maintaining their health. If international organisations are inactive on this issue, it's imperative to compel them into action. Merely observing discussions about it on social media, I've noticed widespread ignorance surrounding the topic," he stated.
Adekunle Gold Foundation
On 11 May, the 'Catch Me If You Can' hitmaker conducted a medical outreach in Lagos State, partnering with the Sickle Cell Advocacy and Management Initiative to raise awareness and advocate for the disease.
The outreach provided medical treatment to up to 250 patients, offering thorough examinations, medications, and valuable health management advice.
Through his foundation, the Adekunle Gold Foundation, the singer expressed his commitment to ensuring that individuals living with sickle cell feel secure and supported.
He noted, "I initially thought my task was significant, but witnessing the events has shown me it's even more immense. It transcends my scope, leaving me inspired, invigorated, and emotional, especially seeing others' struggles. It's reinforced my determination to amplify my voice on sickle cell awareness. The world must become informed about sickle cell.
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"Unlike countries such as the UK and Canada, where there are established policies for sickle cell patients, we lack such support where it's most needed. Many cannot afford necessities like folic acid, which should be readily accessible. It's disheartening that some can't even afford proper meals."
Aim
Through his foundation and partnerships, the singer stated that his goal is to raise awareness about sickle cell disease, ensuring that people understand the challenges patients face.
He emphasised that his foundation aims to meet the needs of children fighting the disease across the African continent.
"I want everyone to know the importance of understanding and treating people with this condition. People must know their genotype. Establishing this foundation signals that it's time to take action. I'll keep advocating, organising outreaches, and fighting for it.
"I urge the international community to prioritise sickle cell disease just as we do with other illnesses. It disproportionately affects my community, and I implore the world to take action."
He urged those living with the disease not to let it define their lives but to do what they can.
