Bruce Ndlovu — Whiile for most people their early years bring memories of innocent bliss, Ms Molyn Chima (37) says she hated her childhood.
Growing up, while other children enjoyed themselves in the playground during break time at school, Ms Chima would find herself lost on the sidelines, a lonely island of sadness surrounded by a sea of boundless happiness.
Those were tough times for Ms Chima. Her exile from the rest of her age-mates was no fault of her own. As she suffered from sickle cell anaemia, she would spend weeks away from school. The excruciating pain she suffered kept her away from the classroom.
Thus, she was unable to strike any meaningful bond with her classmates. Her periodic absences also had another unintended effect. In the days when HIV/Aids was regarded as a death sentence and stigma followed those who suffered from it like a dark cloud, Ms Chima's disappearance saw her labelled as a patient of the scourge by her classmates. At a very tender age, she found herself suffering both the pain of a sickle cell patient and the stigma of an HIV/Aids patient.
"I hate my childhood, I have terrible memories of it. Imagine during break-time other kids would gather in a circle and start sharing food while I tucked myself alone in a corner. They excluded me because they suspected I regularly missed school, at one time for two months, because I had HIV/Aids," said Ms Chima.
According to the US National Heart, Lung and Blood Institute, sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin, the protein that carries oxygen through the body. Normally, red blood cells are disc-shaped and flexible enough to move easily through the blood vessels. In sickle cell disease, red blood cells become crescent -- or "sickle- shaped" due to a genetic mutation.
These sickled red blood cells do not bend or move easily and can block blood flow to the rest of the body. The blocked blood flow through the body can lead to serious problems including stroke, eye problems, infections and episodes of pain called pain crises.
According to Ms Chima, the pain that afflicts a sickle cell patient during a crisis has been described as worse than childbirth.
"Sickle cell is an inherited condition and you are born with it. It's different from, for example, gout which develops over time. Sickle cell anaemia causes severe pain in the joints. It can be anywhere from head to toe. It can be the head, it can be the chest, and it can be the back. It can be anywhere. People have tried to describe the pain and most of the mothers who went to labour said they were expecting their labour pains to exceed sickle cell pain but it didn't.
"So, that is the kind of pain that is experienced by every sickle cell patient. Some have described it as an experience of having a truck running over your bones or someone using a chainsaw to try and cut your leg," she said.
The World Health Organisation (WHO) estimates that more than 100 000 sickle cell patients are born every year with 75 percent of these children dying before the age of five due to complications associated with the illness. It is also estimated that 75 percent of sickle cell patients are in Africa. When Ms Chima, now a nurse at the Parirenyatwa Group of Hospitals went to seek treatment during a crisis, her doctor told her she was lucky to have lived beyond her first years.
"When I was doing my surgery attachment at Mpilo Central Hospital, I got into a sickle cell crisis and I went to see a doctor. He told me that it was impossible that I had sickle cell at my age. He said people with sickle cell do not live up to my age."
Ms Chima, who was diagnosed the disease when she was only nine years old, described the heart-breaking loneliness of sickle cell patients, most of whom are not even aware that they suffer from the illness. In a world where superstitious beliefs are dominant, sufferers have also found themselves misdiagnosed by traditional and faith healers, who attribute their illness to witchcraft and other dark arts.
"Growing up, I was the only sickle cell patient that I knew and when I spoke about establishing a clinic for sickle cell, I was told that there were very few people with the condition and I shouldn't really bother," she said.
Financially, managing sickle cell also leaves a heavy toll on patients, as the medication that helps one manage the disease can set one back as much as US$60 per month.
"You're required to take your medication from the day you're diagnosed with sickle cell up until the day that you leave this earth."
In 2017, Ms Chima founded the Sickle Cell Anaemia Trust of Zimbabwe (SCATZ) to raise awareness of a disease described as "rare" due to lack of knowledge among African populations, which bear the brunt of the affliction.
According to Ms Chima, research has shown that at least 10 percent of Zimbabweans suffer from sickle cell, a disease which mostly affects black people across the world. As awareness of this silent killer grows, the Ministry of Health and Child Care has also started to step up campaigns to educate more people, including health professionals about sickle cell.
"This is not really the Ministry of Health's problem because after approaching them for help they have been the ones helping us raise awareness, they have been the ones that have told me that sickle cell is there and I should go out there and work and find those people.
"There's a theory that sickle cell is found near the Equatorial region and that is the information that was disseminated to our medical professionals so they did not bother to screen for sickle cell. However, now that there is awareness, they are screening for sickle cell and that is due to the response from the Ministry of Health," she said.
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Last year, the Government together with SCATZ set up Zimbabwe's first sickle cell clinic in Bindura as part of efforts to ensure improved access to treatment and care for patients who have the genetic condition.
Among those in attendance at that launch was 18-year-old Tawananyasha Bisolomu, who was diagnosed with the disease when he was five. At the age of 16, Bisolomu was bound to a wheelchair and was told by doctors that he needed to have an operation, but had to wait until he turned 18.
"For two years I was in bed. I could not do anything as a result. I have never really received proper education since I was at home more often than in school," he said.
Ms Chima said the only way to increase awareness and garner support fwas to do more research while encouraging authorities to make scanning for sickle cell mandatory in future.
"The issue is that we need to collect a lot of data first for us to be able to do a lot of things concerning sickle cell disease. If you look at malaria, there are so many cases recorded and that's why everyone gives it attention and so many donors are helping out. So, if you do not research on sickle cell and present the information, how can people help you? People just won't know."
