They said I won't make it past 18, says sickle cell anaemia survivor

Immediately after Faith Kwoba was born, her parents noticed something was wrong. Her skin was yellowish, and her limbs and body were swollen.

But it wasn’t until she was 3.5 years old that she was diagnosed with sickle cell anaemia, a condition that would shape her entire life. Yet, Faith has spent every day since defying the odds that others might not have accepted.

According to National Institutes of Health (NIH) Sickle cell disease is a group of inherited red blood cell disorders that affect haemoglobin, the protein that carries oxygen through the body.

NIH explains that normally, red blood cells are disc-shaped and flexible enough to move easily through the blood vessels. In sickle cell disease, red blood cells become crescent- or “sickle”-shaped due to a genetic mutation. These sickled red blood cells do not bend or move easily and can block blood flow to the rest of the body.

According to Dr Charles Muteshi, a consultant in reproductive medicine and surgery from Oxford University, early signs of sickle cell anaemia in infants includes jaundice, which is the yellowing of the skin and the eyes becoming white, painful swelling of hands and feet, fatigue, paleness and frequent weakness of the body.

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“The blocked blood flow through the body can lead to serious problems, it may cause strokes, eye problems, frequent infections, and episodes of pain called pain crises,” said Dr. Muteshi.

Reflecting on her early years, Faith recalls that she didn’t fully understand the severity of her diagnosis. But as she grew older, the impact became more evident.

Her parents remained steadfast in their support, ensuring she had regular check-ups, medication, and access to the healthcare system despite the financial and emotional strain.

The cost of managing sickle cell anemia has been a significant burden. “Hydroxyurea costs Sh50 per tablet,” Faith explains. “With two tablets a day, it quickly adds up. And that’s just one of many medications I need.”

For families dealing with the high costs of these treatments, the financial strain can be overwhelming. Faith’s family struggled with these costs, but their commitment to her health never wavered.

Faith’s school years were filled with additional challenges. “I didn’t want anyone to know about my condition,” she recalls. “I was always afraid of being different.”

She would join friends at social events, even when it meant risking her health. “I tried to act like everything was normal, even though I had to be cautious about cold weather and avoid overexerting myself,” she notes. The fear of revealing her condition made her reluctant to speak up when she was unwell. Instead of seeking help, she often pretended her pain was just a regular illness.

As she grew older, the stigma and misconceptions surrounding sickle cell anemia weighed heavily on her and at some point lowered her self-esteem but the only option she had was to be strong and carry on with life.

“People used to say ‘if you reach 18, you’re lucky’. When I turned 18, I was anxious. Each milestone felt like a victory, but also a reminder of the fears that others had imposed on me. Despite these challenges, I surpassed expectations, moving beyond the age limits that others had predicted for me and next month, I will be celebrating my 30th birthday,” she narrated.

Faith pursued a career in nursing, driven by her desire to help others with sickle cell anemia while managing her own health.

“I wanted to show that living with sickle cell doesn’t mean giving up on your dreams,” she says. She now supports and educates families, encouraging regular check-ups and adherence to prescribed treatments.

Faith notes that education and awareness are crucial in combating the myths and stigma surrounding sickle cell anemia.

She also a strong advocate for raising awareness about sickle cell anemia, participating in community outreach programs and support groups.

“Being part of these groups has been a lifeline,” she says, emphasising the importance of connecting with others who understand the challenges of the condition.

According to the Centers for Disease Control (CDC), sickle cell is a genetic condition present at birth, inherited when a child receives two genes—one from each parent—that code for abnormal hemoglobin.

Faith notes that her father is a carrier of the disease. “ I have never understood how in a family of 12 siblings I’m the only one who have the condition despite us sharing the same parent who is anemic,” she says, still puzzled by the genetic lottery.

In Kenya, the World Health Organization (WHO) reports that 14,000 children are born with sickle cell each year. Globally, over 300,000 children are born with the condition annually.

In the absence of routine newborn screening and appropriate treatment, an estimated 50-90 per cent of those born with the condition die undiagnosed before their fifth birthday in Sub-Saharan Africa, according to the Ministry of Health. Therefore, early diagnosis and treatment are important and a person with the disease can live a full, active life.

Despite the challenges, Faith’s story is one of resilience and hope. “It’s about accepting the condition and living life to the fullest,” she says, determined to continue raising awareness and supporting others on the same journey.