For Eunice Owino, 40, every day is a miracle and she does not take it for granted.
Eunice, founder of Sickle Cell Uhuru Trust (SCUT), was diagnosed with the disease at only eight months old. Her parents told her that she showed the same symptoms as her late sister, who died before she was born.
Growing up was difficult for her, because she spent half of her life in and out of hospitals.
“All I remember is my mother telling me, ‘Drink water, put on your sweater, rest, don’t do this or that’, and then when the weather changed from hot to cold and cold to hot, I always used to get ill.”
In 2013, she underwent hip replacement surgery, after being diagnosed with avascular necrosis, a condition that she had suffered since 2003.
Every day she deals with health issues associated with this condition, which include joint pain and fever.
To manage the condition, apart from monthly hospital checkups, Eunice’s medicine cabinet is always full. From hydroxyurea and Pen V to Folic, Paludrine, Zinc tablets and different painkillers.
“Apart from that, I have to keep warm during cold seasons, drinking water (hot, cold or warm), eat vegetables, fruits, take my medication at the right time and go for my regular checkups after every three months,” she says.
To some, perhaps this is too much work, but for Eunice, it is a routine that continues to help her keep the disease at bay, in a country where the life expectancy of people with the condition is low.
Sickle cell disease affects 20-25 million people globally, of whom 12-15 million live in Africa.
Globally, it is estimated that sickle cell disease (SCD) accounts for between six and 15 per cent of deaths among children aged less than five.
In the absence of routine newborn screening and appropriate treatment, it is estimated that 50 percent of those born with the condition die undiagnosed before their fifth birthday in sub-Saharan Africa.
In Kenya, it is estimated that 6,000 children are born with sickle cell disease every year.
But Dr Gladwell Gathecha, the head of the violence and injury prevention division at the Ministry of Health, says Kenya’s figures might be higher because we have no efficient system to capture the disease data when children are born.
The disease is common across Kenya, with high burden pockets in the Western, Nyanza and coastal regions, affecting 18 counties.
But with migration and intermarriage, the condition is increasingly being reported in other regions.
According to Dr Fredrick Okinyi, the chair of the Sickle Cell Federation, the health consequences of the disease include recurrent pain, organ damage and increased risk for infections. These have the potential to interfere with many aspects of a patient’s life, such as growth, psychosocial development, education and employment.
However, he says, with modern treatment the disease is becoming more manageable and people are living beyond the minimum age previously projected.
“Recent studies have shown that early diagnosis and supportive care have a significant impact on the reduction of complications, mortality and improved quality of life.”
But the problem here in Kenya, he says, is that many cannot afford the cost of diagnosis and treatment.
The National Hospital Insurance Fund (NHIF) does not cover some treatments of the disease.
For instance, reticulocyte counts can reduce the cost of treatment for SCD patients to between Sh40,000 and Sh80,000, by preventing hospitalization, which can push the cost of treatment to up to Sh120,000.
“NHIF coverage should go beyond just hydroxyurea to cover other treatments,” he insists
Because the world struggles with treating the disease, he said, emphasis should shift to early detection and prevention of long-term complications.
“Persons living with SCD are faced with numerous health challenges, thus early diagnosis is important to initiate prompt management so as to reduce the burden of the disease.”
He also underscores the need for serious awareness campaigns for health workers to standardise the management and diagnosis of the disease across the country.
“Kenya doesn’t have standardised guidelines for the management of SCD and thus the development of comprehensive recommendations for early detection and management of the condition,” he said.
Managing SCD, he said, has become increasingly multi-disciplinary and complex.
“This calls for the development of guidelines for the management of specific clinical problems and protocols for various therapeutic procedures to facilitate uniformity and standardisation of care across different disciplines,” added Dr Okinyi.
Prof Fred Were, from the Kenya Pediatric Research Consortium, says managing the burden must go beyond treatment as he roots for more campaigns to educate and sensitise people on the disease.
“There should be intense community sensitisation. This includes premarital screening, where couples should screen for their status before getting married. Family trees should be used to link the potential carriers and SCD patients,” he says.
Leaders should also participate in the fight against this disease, says Dr Gathecha. “We cannot win if we do not have the goodwill of the leadership, especially in the endemic areas,” he said.