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Diagnosed with sickle cell at just three years old, Nicole has spent most of her life navigating the complexities and misconceptions surrounding the condition.
But despite the obstacles, she's determined to live life on her own terms—and to challenge the myths that continue to surround sickle cell warriors like herself.
Early diagnosis and childhood realisations
Nicole’s diagnosis came after her parents noticed her eyes had turned yellow—a sign of jaundice. “They took me to hospital, tests were done, and that’s when the diagnosis came in,” she recalls.
Although she had a relatively normal childhood, punctuated only occasionally by hospital visits, everything changed in 2007.
I got admitted in hospital while my friends were at school. That’s when it hit me—sickle cell is real.
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From that point, she started learning more about her condition. While schools taught about sickle cell, she says it wasn’t nearly enough.
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The teenage shift and its challenges
Her teenage years brought new challenges. With the onset of menstruation, hospital visits became more frequent and more disruptive. “I missed some exams in high school, like the CATS, but thankfully I did my KCPE and KCSE and did well.”
University, however, came with its own set of hurdles. Nicole had to defer semesters and skip exams due to frequent hospitalisation. Yet she pressed on, supported by understanding lecturers and caregivers.
Debunking the myths
Nicole is vocal about the myths that plague those with sickle cell—particularly the idea that they can’t live past 18. She remembers overhearing a nurse say this while she was in hospital in her 20s.
This is a whole nurse saying we don’t live past 18. I was like, what are you doing in school if this is what you believe?
She explains that sickle cell is an inherited condition, not something you catch.
It’s caused by abnormally shaped red blood cells—sickle-shaped rather than round—which can block blood vessels and cause intense pain episodes known as crises.
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“The pain ranges from one to a hundred,” Nicole says. Some crises can be managed with over-the-counter medication, but others require emergency care, IV fluids, or even blood transfusions when blood counts drop dangerously low.
The silent burden patients deal with
Despite her strength, the condition remains physically and emotionally taxing. Nicole talks openly about the toll it takes on her daily life and plans.
I could be planning a trip with friends, then suddenly I’m in hospital. It puts my life on hold, and I have to play catch-up in some parts.
Relationships have also been affected. One serious relationship ended when she expressed her decision not to have children.
It may be selfish to some, but I don’t want to put my child through what I’ve been through.
The financial weight
Managing sickle cell isn’t just emotionally draining—it’s financially taxing too. Nicole notes that without reliable insurance, covering costs is almost impossible.
By the fourth month of the year, I’ve usually exhausted the entire limit my insurance company set for me.
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And with the current uncertainties around Kenya’s health insurance schemes like NHIF and SHA, many sickle cell patients are left in limbo.
Choosing joy and living fully
At 29—what she calls her 'grown woman age'—Nicole has made peace with her condition. Each birthday is a celebration, a milestone she doesn't take for granted.
'Every birthday is a gift to me. That’s the biggest gift I’ve ever gotten,' she shares.
She lives life fully, though with moderation. And her message to others with sickle cell is one of hope:
Don’t let sickle cell hold you back. It’s not a life sentence. Take your meds, visit the hospital when needed—but live your life. This is the life you get. Go out there and do whatever you want to do.
How you can support
Nicole urges the public to start by educating themselves. “The education system failed us in some areas. People need to do their research, question the myths, and support us—not just during the good times, but even in the bad.”
She’s not asking for pity. She’s asking for understanding, for inclusion, and most of all, for everyone to help create a world where people living with sickle cell can thrive without judgement.