By Lenah Bosibori
NAIROBI, Kenya — For many young Kenyans, finding a job after college or university is difficult. For people living with sickle cell disease, however, getting a job can be only the beginning of another struggle: staying healthy enough to keep it.
Frequent pain crises, illness, hospital visits and the cost of treatment can disrupt education and employment, while misconceptions about sickle cell disease can expose patients to stigma and discrimination.
For 44-year-old Judy Malila, the consequences were personal. She says she lost her job after falling ill and missing work for two consecutive weeks.
“I was laid off because at some point I fell sick for two weeks consecutively without going to work,” Malila says.
When she was ready to return, she says her employer told her she could no longer continue working because of the cost associated with her medical care.
“My employer said that I was not supposed to be there because my medical bills were too much,” she says.
Malila’s experience highlights the challenges faced by people living with sickle cell disease as they try to remain in school, find employment and maintain their livelihoods while managing a lifelong condition.
A lifelong condition
Sickle cell disease is an inherited blood disorder in which red blood cells become rigid and sickle-shaped. This can interfere with the flow of blood and oxygen in the body, causing severe pain, anaemia, fatigue and other complications that may require regular medical attention.
Kenya records about 14,000 children born with sickle cell disease every year, according to the Ministry of Health, with a particularly high burden reported in Western Kenya, Nyanza and the Coast.
Malila shared her experience during the fifth annual charity football match organised by the Children’s Sickle Cell Foundation in Nairobi. The event sought to raise awareness, promote screening and mobilise support for families affected by the disease.
‘Sickle cell does not define you’
For 24-year-old Ivy Akoth (speaking left), the challenges began in childhood.
Akoth says she started showing symptoms when she was seven months old. Her parents, however, did not know what was wrong until she was about one year old, when she was tested and diagnosed.
She began treatment at Kenyatta National Hospital before moving to Baraka Medical Centre at the age of eight.
At school, Akoth says she faced bullying from classmates who believed she was pretending to be sick or receiving preferential treatment because of her condition.
Her parents and teachers responded by bringing medical professionals to the school to explain sickle cell disease.
The awareness helped her classmates understand why she sometimes missed school or required additional support.
“Sickle cell does not define you. It does not define who you are, what you’re capable of, and what you can or can’t do,” Akoth says.
“You are like normal people. You can do anything and everything as long as you put your mind to it.”
She says living with the disease comes with periods of illness and recovery, but a diagnosis should not determine a person’s future.
“There are ups and downs. You can be sick for a whole semester, go back, but life moves on,” she says.
From predictions of early death to a master’s degree
Etemesi Ochola, 41, was diagnosed with sickle cell disease when he was seven.
He recalls being told that people living with the condition would die at 10, 20 or 30 years of age.
Decades later, Ochola is pursuing a master’s degree and has turned his experience into advocacy and writing.
He has written books aimed at children, teenagers living with complications and caregivers seeking information about the disease. He has also written Diary of Hope, which examines some of the mental health challenges associated with living with sickle cell.
“There is fear of pain; there’s depression because you’re not getting jobs,” he says.
“You have gone to school, but no one wants to hire a person who is not feeling well.”
Ochola says employment is not simply about earning an income. For people living with chronic illness, he says, it is also linked to dignity and independence.
“We need to do more to employ and to give our warriors opportunity at work, at school,” he says.
His own education was interrupted by illness. Ochola says he was dismissed from school after failing three units while unwell, although the institution later recalled him and gave him another opportunity to continue his studies.
“For those who have undergone that and have been disqualified from education, I’m talking for them that the government should do something for these warriors,” he says.
The cost of staying well
Beyond employment and education, the cost of managing sickle cell disease can place significant financial pressure on individuals and families.
Ochola says hydroxyurea, which he takes regularly, costs between Sh45 and Sh60 per tablet at different pharmacies. He takes three tablets a day, meaning the medicine alone can cost more than Sh120 daily. With other medicines, he says his daily expenditure can rise to about Sh200.
He also takes folic acid and other medicines.
For families with more than one person living with sickle cell, the financial burden can be even greater.
Ochola says some parents may be forced to make difficult decisions over which child should receive medicine when money is limited.
The Children’s Sickle Cell Foundation and its partners are working to improve access to medicines. Ochola says the foundation has worked with donors to procure drugs for patients through clinics.
A revolving fund has also been introduced to enable hospitals to purchase medicines in bulk and make them available at lower prices.
Concerns over healthcare coverage
Access to healthcare remains another concern.
Ochola says existing health insurance arrangements do not always adequately meet the needs of people who may require treatment several times a month.
He says some outpatient arrangements may limit patients to one visit to a facility each month, yet a person living with sickle cell may experience several crises.
“When the weather changes, you find warriors getting sick more than three times, and you can’t go to that facility again,” he says.
Malila says changes in weather, particularly cold conditions, can trigger illness for some people living with sickle cell.
During severe episodes, she says patients can become so weak that they cannot walk or perform basic tasks without assistance.
“You need somebody there at least to support you and to walk with you throughout the journey,” she says.
She is calling on the Social Health Authority (SHA) to provide broader access to healthcare for people living with the condition.
“We ask the Social Health Authority (SHA) to give us some amount, a good standard of visits,” she says.
Challenging myths and stigma
Malila also wants the public to challenge misconceptions about sickle cell disease.
One misconception, she says, is that women living with the condition cannot have children.
Malila, who has two sons whom she says are sickle cell carriers, says women living with the disease can have children with appropriate medical care and support.
She encourages people living with sickle cell to stay hydrated, exercise appropriately and prepare for changes in weather.
“We are human beings like the rest of human beings,” she says.
“Give us that opportunity. When you fall sick, support us, and when we get back better, we come back healthier and even stronger.”
Football brings awareness to young people
Selina Ogueno, Chief Executive Officer of the Children’s Sickle Cell Foundation and a mother of a young man living with sickle cell, says reaching young people with accurate information is essential, particularly on genetics and sickle cell disease.
“We found out that it’s very hard to reach the youth, and the youth are the people whom we need to reach when it comes to talking about matters of genetics and sickle cell,” she says.
The charity football match formed part of activities marking Sickle Cell Awareness Month in September.
Young people participated in football while also receiving information about sickle cell disease and accessing screening services.
The event also offered screening for other conditions, including high blood pressure and diabetes, while raising funds to support families affected by sickle cell.
The foundation has partnered with several organisations, including the French Embassy, which Ogueno says has supported the event for the past three years.
French Ambassador Wadid Benabou said France has made the fight against sickle cell disease a priority, supporting areas including early screening and the training of doctors.
“France has made the fight against sickle cell disease a priority. We try to support early screening and the training of doctors, among other areas,” he said.
“Fighting sickle cell disease is like football. It is teamwork.”
He said collaboration involving the French Development Agency, the Pierre Fabre Foundation, Kenya’s Ministry of Health, civil society organisations and health professionals is important in addressing the disease.
For Ogueno, the football match is also a demonstration that people living with sickle cell can participate, contribute and pursue their ambitions when given appropriate support.
“It is also to demonstrate that people living with sickle cell can do a lot more,” she says.
She wants the government to expand opportunities for people living with the disease, improve access to affordable medicines and strengthen health coverage.
“To the government, give us more opportunities as warriors, jobs, and subsidized medication,” she says.
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