It is one hour at a time for Gladicy Mbeyu, a sickle cell warrior who was last year awarded a state commendation for helping children battling diseases in the coastal region.
Ms Mbeyu, 56, says although the disease was in her body from birth, the severity and symptoms of sickle cell disease vary over time. And they are painful episodes and complications.
“One minute you are fine and you’re ready to start the day, and then within the next hour you may have to cancel everything because of the complications," she said.
At six months old, Mbeyu developed jaundice, and a blood screening test revealed that she had Sickle Cell Disease (SCD), a genetic disorder that affects the red blood cells.
Her parents were terrified. The family were even devastated after Mbeyu's three other siblings were also diagnosed with sickle cell disease.
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"I spent a lot of time in the hospital as a young child. My parents protected us from stressors, and we learnt how to take care of ourselves to grow and to thrive," she said.
Added Mbeyu: "I sometimes wonder how I came through it. On reflection, it’s a combination of determination and strength we drew from my parents."
A teacher at Kilimo Primary School in Kilifi, Mbeyu, has defied the odds associated with sickle cell disease, which historically claimed the lives of many children before they reached their fifth birthday.
Although sickle cell disease (SCD) was regarded as a death sentence 56 years ago, individuals living with the condition can now access treatments that allow them to lead long and fulfilling lives.
Mbeyu is a source of encouragement that it is possible to have a fruitful, long life despite the disease’s challenges.
"Those of us with sickle cell disease have to take extra care to stay healthy and avoid sickle cell crises," said Mbeyu, an advocate against myths surrounding SCD.
She works hard to raise awareness in the villages as well as volunteering with charities and sharing her story to encourage other SCD patients.
Through her advocacy work, children who had lost hope and dropped out of school because they were told they would not survive into adulthood have returned to class.
She dedicates time to walking in the villages together with charity groups, rescuing many children with SCD and educating parents on how to take care of these children.
"I have met children who have lost hope because they were told they will not survive into adulthood. Some are locked away with parents waiting for them to die," said Mbeyu.
In rural parts of Kilifi, she said many parents said they have little knowledge about SCD, and they are forced to lock up their sick children in rooms.
"I am so motivated to help these parents understand that children with sickle cell are normal children and need to go to school.
In her awareness campaign, she involves men and the elderly in interactive sessions since they are the decision-makers in the community and custodians who pass the myths and beliefs down to the new generations.
She also looks to reduce feelings of social exclusion and help to build relationships.
Due to her advocacy work around SCD, she was last year awarded a head of state commendation by President William Ruto.
Stigma against the disease is widespread, even associated with witchcraft in Kilifi. Most locals believe that sickle cell patients wouldn’t survive beyond the age of 18 years.
The patients are perceived as a curse and possessed by evil spirits, leading to abuse and ostracism. Young sickle cell patients are called “wa luhanga”, meaning “born to die”.
It is believed that these children are destined to die young and return to their fellow evil spirits. While some locals still believe that those with sickle cell disease are possessed.
Josefridah Ngowa, a specialist clinical officer and sickle cell champion at the Kilifi Referral Hospital said 800 children and 300 adults are battling the illness in the county.
She said SCD was one of the diseases that is a big burden in the county, adding that Kilifi offers free services and drugs for children, while adults pay.
In addition, there are special comprehensive care groups for the patients meant to encourage each other to care for the burden and help in tracing patients.
"About 30 per cent of adults with SCD are covered by the Social Health Insurance Fund (SHIF)," said Ngowa, saying newborns with paleness, fatigue, fast heartbeat, dactylitis, where the fingers and toes swell, and jaundice should seek early diagnosis.
People with SCD have abnormally shaped red blood cells which cannot move easily through blood vessels. The blocked blood flow through the body can lead to serious problems, including stroke, eye problems, infections and severe episodes of pain called crises.
“With sickle cell, there isn’t a routine cure accessible to people with the disease, so all of our medical procedures are to treat or prevent complications of the condition.
The drug hydroxyurea, commonly used to prevent sickle-shaped blood cells from forming, was approved for treatment in Kenya in the past decade and is the most affordable option to manage the symptoms, although “it does not work for everyone and the term ‘affordable’ is a stretch," explained Ms Ngowa.
In addition, sickle cell patients are chronically anaemic, so their blood doesn’t hold enough iron and has lower baseline haemoglobin compared to people in normal health.
She further says that the only treatment option is a bone marrow transplant, but it costs about Sh3 million, and comes with so many limitations, and the majority of the people can not afford it, and getting a compatible donor is also not easy.