Award-winning Nigerian singer Adekunle Gold rose to international fame when his debut album “Gold” reached number seven on the Billboard World Charts. Since then, the 37-year-old has released four more albums, amassing hundreds of millions of streams worldwide.

Behind the scenes, however, he has been quietly battling sickle cell disease, an inherited blood disorder that leads to abnormally shaped red blood cells, causing severe pain, anemia, and potentially life-threatening complications. It affects children who inherit two copies of the sickle cell gene, one from each parent.

The disease is most prevalent in Africa, which accounts for 66% of cases worldwide, according to the World Health Organization. Nigeria bears the highest burden, where as many as 150,000 babies are born with sickle cell disease annually – the most of any country.

Adekunle Gold first wrote of his woes with sickle cell disease in 2022 in his song “5 Star.” Now, he is readying himself for a long-term commitment to advocacy, announcing the establishment of the Adekunle Gold Foundation, which will focus on addressing the needs of children battling sickle cell disease on the African continent.

Recently, the singer sat down with CNN’s Larry Madowo for his first in-depth interview about living with sickle cell.

Larry Madowo: Why are you speaking up about sickle cell disease now and especially being very aggressive about this awareness?

Adekunle Gold: I just really got the courage to come out and speak about it. You know, a lot of people can’t share their stories like I can. I was writing the song “5 Star” and reflecting on my life, the journey, and how I’m a miracle. I was reflecting on that song, and I thought, maybe it’s time to learn my voice. People are dying, people are going through it. People can’t afford basic things that they need to sustain their health, and if the international organizations are not doing anything about it, it’s time to force their hands to do it.

Larry Madowo: What challenges have you had to overcome while living with sickle cell?

Adekunle Gold: I constantly put myself in situations that made me sick as a child. For example, doing strenuous activities as a child that I was not supposed to do and there were always consequences, you know? But I always knew that I didn’t want this thing to define me. So, if it means that I need to exercise more, take my drugs, eat well, rest well, and take more water, then I need to do that always.

Larry Madowo: Are there any memorable things that you’ve come through during your advocacy work when people are not even aware of what they’re facing?

Adekunle Gold: Just speaking up about it on social, I realized that a lot of people are ignorant about it. This is something that I inherited, and you’re trolling me for it. So, you realize people don’t even know these things. I just need more people to be aware.

Larry Madowo: What are some of the barriers to receiving proper care for sickle cell patients in West Africa? In Nigeria?

Adekunle Gold: Listen, people don’t have money, bro. The last outreach I did people came to Lagos to take drugs, to check their BP (blood pressure), to check their children all the way from Ilorin [300 kilometers away from Lagos]. And I’m like, this is insane. We don’t have facilities where you can just be in your place. Other countries like the UK and Canada have policies for sickle cell. Where it affects us the most, we don’t have (accessible care). People can’t afford to buy folic acid and folic acid is the smallest of things that you should be able to get.

Larry Madowo: What do you hope to achieve by adding your voice to this, by speaking up publicly?

Adekunle Gold: I want everybody to, first of all, be aware of it and know how to treat people that have it.  I also want people to understand that it is important to check your genotype.

Larry Madowo: You’re the embodiment that you can live with sickle cell and have a full, healthy, and powerful life. Will you keep talking about this in your music and your public appearances with your shows?

Adekunle Gold: I started the foundation, so you know it’s real. It’s game time from now on. So, I am constantly learning my voice, constantly doing outreach, and constantly fighting for it. I want the international community to pay attention just like they do to other diseases. Sickle cell is a big one. It affects my people the most, and I want the world to do something about it.

Watch Larry Madowo’s full interview with Adekunle Gold on African Voices Changemakers.