In her first year of high school, a girl named Barbara Diero and the author were often mistaken for sisters. Both shared similar features and the burden of sickle cell disease, which forged a deep bond. Barbara suffered painful leg ulcers and slower speech and movement, while the author's symptoms were less conspicuous. 'We will fight this,' the author would tell her, and Barbara would smile her infectious smile.
Sickle cell is the most common inherited haematological disorder in Kenya, affecting haemoglobin and causing painful crises. According to the World Health Organization, it affects nearly 100 million people worldwide, with over 300,000 children born with the disease each year, more than 70% in sub-Saharan Africa. Without newborn screening and proper treatment, more than half of those in sub-Saharan Africa die undiagnosed before age five.
About 14,000 children are born in Kenya with sickle cell disease each year. In rural areas, access to medical treatment is challenging. The author's medical life has been in two parts: pre-18 and post-18. Living in Nairobi with parents who had medical insurance provided access to private hospitals and effective pain medication. Before 18, diet was key, with iron-rich foods and traditional meals, and cheat days limited to Saturdays, Christmas, and birthdays.
After 18, the author joined a university with a hospital but lost access to fast-acting medication. Pain crises often reached level 10, but the medication available was suited for level 4, requiring multiple injections. In 2014, the author suffered the worst pain of her life after contracting malaria, which triggered severe pain and took a year to eradicate. This debunked the myth that those with sickle cell cannot contract malaria.
In 2021, a colleague's four-year-old was diagnosed with sickle cell. The family learned about the condition and found routines to keep the child out of hospital. The child's last admission was in 2021, thanks to medication, a traditional diet, and plenty of hydration. The author reflects on being a 'sickler' in her 30s, considering herself one of the lucky ones, while Barbara did not make it past 18.
