Young sickle cell warrior champions care for fellow patients

25 years old, Harriet Nasambu.[Juliet Omelo/Standard]

At just 25 years old, Harriet Nasambu stands as a beacon of resilience and compassion in her community.

A resident of Mayanja village in Bungoma County, Nasambu has transformed her personal struggle with sickle cell disease into a powerful mission to uplift others fighting the same battle.

Diagnosed with the hereditary condition at the age of one, her childhood was marked by frequent medical emergencies, intense physical pain, and community stigma. Many in her village believed she wouldn't live past the age of 18.

But today, Nasambu is not only a graduate in Information Technology, but also a passionate advocate, working tirelessly to raise awareness, support, and provide lifesaving care to fellow sickle cell patients in her community.

She explains that individuals with sickle cell often experience crises—painful episodes caused by sickle-shaped red blood cells blocking blood flow in small vessels.

“It’s excruciating and often requires immediate hospitalisation,” she says.

Nasambu discovered that her personal triggers—especially cold temperatures—became more frequent during her high school years.

“Waking up early, taking cold showers, and attending morning preps often led to frequent crises,” she recalled. “Understanding these triggers is crucial. Once you identify them, you can take steps to avoid or reduce their impact.”

The High Cost of Treatment

Sickle cell treatment remains unaffordable for many rural families. The most commonly used medication, Hydroxyurea, costs Sh50 per tablet, and patients are required to take up to three tablets daily.

“Many families live hand-to-mouth and can’t afford even one tablet a day for their sick children,” she said. “It’s heartbreaking.”

Despite these obstacles, Nasambu has turned her pain into purpose. She currently supports five young sickle cell patients in her community by providing them with Hydroxyurea medication, thanks to donations from well-wishers.

“The stigma sicklers face is devastating,” she added. “Some families isolate children with the condition because they believe it’s caused by witchcraft. But this is a manageable genetic disorder—not a curse.”

Nasambu dreams of reaching even more patients—not just with medicine, but by providing education to her community.

“When people understand that sickle cell is a normal, manageable condition like any other, they’ll stop the discrimination,” she said.

Partnering with Health Workers

Every Wednesday, she visits Mayanja Health Centre to work with Community Health Promoters (CHPs), equipping them with the knowledge to identify and support affected families.

“CHPs are our link to households,” she said. “They help me identify children early and connect them to care.”

She is also advocating for better menstrual health management among teenage girls with sickle cell. Many of them suffer from menorrhagia—heavy menstrual bleeding—that leads to severe blood loss and frequent transfusions.

“Our blood is already compromised,” she said. “Losing even more during menstruation puts us at serious risk.”

She provides these girls with essential supplies and urges them to seek urgent care if bleeding becomes excessive.

Medical Perspective and Progress

Dr. Dickens Lubanga, a specialist at Bungoma County Referral Hospital (BCRH), confirms that menorrhagia is particularly dangerous for sickle cell patients.

“It leads to excessive blood loss, which can be life-threatening for those with an already compromised blood system,” he said.

The hospital now offers local testing for sickle cell—previously only available in Eldoret—at a subsidised cost of Sh1,500, thanks to new specialised clinics for sickle cell and haemophilia.

Dr. Lubanga also stressed the importance of premarital screening to reduce the prevalence of the disease.

“Sickle cell is preventable. If couples get tested before marriage, they can make informed decisions,” he said.

BCRH is currently managing over 1,500 patients, but the burden on families remains heavy. With Kenya’s healthcare reforms under the Social Health Authority (SHA), only inpatient services at Level IV hospitals are covered. Outpatient medication like Hydroxyurea must now be paid for out-of-pocket.

“Managing the disease can cost between Sh6,000 and Sh10,000 per month,” said Dr. Lubanga. “That’s simply unaffordable for many.”

A Voice for the Voiceless

As the country marks World Sickle Cell Day, Harriet Nasambu remains a voice for those often unheard. Her story is not only one of survival, but of leadership, compassion, and hope.

“We can’t change the fact that we have sickle cell,” she said, “but we can change how the world treats us.”

Through her grassroots efforts, partnerships with health workers, and unyielding spirit, she’s proving that even the most painful battles can inspire real, lasting change.