Hi Yamaya, thank you for having me.

Can you share a little about your journey living with sickle cell?

From as far back as I can remember, my life has revolved around hospitals, medication, and trying to push through the pain. I was diagnosed as a baby, and my mother always tells me stories of how she used to sit up with me at night, crying because she couldn’t do anything to stop my suffering. As I got older, I realized that this wasn’t something I would outgrow. This was my life.

School was a challenge. I missed so many days that I had to repeat a year. Kids didn’t understand why I was always in the sickbay or why I walked slower than them. Some thought I was making it up. Others just avoided me. I learned quickly that this disease wasn’t just hurting my body—it was isolating me from the world.

That must have been so difficult, especially as a child. How did your family handle it?

 My mother was my biggest support. She did everything she could to make sure I had the best care available. But my father… he distanced himself. I think he felt guilty, knowing that he and my mother were both carriers of the sickle cell trait. Sometimes, I wonder if he resented me because I was a constant reminder of that mistake.

What has adulthood been like for you?

 Hard. Unforgiving. When I was younger, I believed that if I just worked hard enough, I could have a normal life. But the reality is, sickle cell doesn’t care about your dreams. I tried going to university, but the crises kept interrupting my studies. I couldn’t keep up. I eventually dropped out.

Finding work has been just as difficult. Employers don’t understand why I can’t always show up, why I need more rest, or why I can’t do physically demanding tasks. I’ve lost jobs because of it but now I own my business which enables me to call shots when it's best feasible. And relationships ? Relationships are even harder. How do you explain to someone that you may not live long?I don’t blame anyone for walking away. It has gotten to the point where I don't really care about relationships anymore or marriage, I really just want to survive. I've been trying other scientific alternatives into have a healthy child though.

Do you feel like there’s enough awareness and support for people with sickle cell disease in South Africa?

Not at all. It’s a forgotten disease. It’s not talked about enough, and the healthcare system isn’t equipped to handle it properly. Pain management is a battle because doctors sometimes think we’re exaggerating or seeking drugs. There’s little research being done, and treatment options are limited. Unless you have money, you’re at the mercy of a system that doesn’t prioritize your survival.

What do you wish people knew about sickle cell disease?

 That it’s more than just pain. It’s a life of limitations. It’s never being able to plan your future with confidence. It’s watching your friends and peers move on—get married, build careers, travel—while you’re stuck just trying to survive. And most of all, I wish parents understood the risks before bringing a child into this world with this disease. My parents knew. And yet, here I am.

 You said you resent your parents for having you. Can you explain more?

 Yes, I do resent them. They made a choice, and I am the one who has to suffer for it. They knew they were both carriers of the sickle cell gene. They knew the risks. But they still chose to have me. And now, I wake up every day in pain, struggling to find a reason to keep going. I love them, but I also hate them for that decision. It’s a contradiction I don’t think I will ever resolve.

Have you found any sources of comfort or support?

There are support groups, but sometimes, hearing about others' struggles just makes mine feel heavier. And what’s the point? No one is coming to save us. We just live until we don’t and thank goodness that I am still alive till now.