Daphne Machiri
HARARE: Life was forever marked by the silent scream of sickle cell disease, an inherited blood disorder that manifested in his body before he could even utter a word.
As a helpless toddler, his anguished cries echoed through the halls of hospitals, pleading for relief from the unforgiving pain that wracked his frame.
Yet for years, the source of his suffering remained a mystery, leaving his parents frustrated and helpless as they watched their child endure countless hospital visits, misdiagnoses and ineffective treatments.
Sickle cell diseases is a group of disorders that cause red blood cells to become misshapen and break down.
Sickle cell disease is an inherited group of disorders where red blood cells contort into a sickle shape.
The cells die early, leaving a shortage of healthy red blood cells (sickle cell anaemia) and can block blood flow causing pain (sickle cell crisis).
Infections, pain and fatigue are symptoms of sickle cell disease.
Treatments include medication, blood transfusions and rarely a bone-marrow transplant.
Now, successful and stronger than ever at 19 years old, Tawananyasha Bisalomu has defied the odds that see more than half of the approximately 1,000 children born with sickle cell disease in Africa every day die before their fifth birthdays, despite the fact that with access to treatment they can live long and happy lives.
According to World Health Organisation approximately 5% of the world’s population carries trait genes for haemoglobin disorders, mainly, sickle-cell disease and thalassaemia.
Haemoglobin disorders are genetic blood diseases due to inheritance of mutant haemoglobin genes from both, generally healthy and parents.
More so, over 300 000 babies with severe haemoglobin disorders are born each year.
“Growing up, I spent a lot of time in the hospital in and out of the hospital l, especially as a very young child. Those of us with sickle cell disease have to take extra care to stay healthy and avoid sickle cell crises.
“The only medication I received each time I visited the hospital was painkillers, with no diagnosis. So, I grew up thinking I had a backache problem, painful legs, and chest complications, unaware of the real issue that had been present since I was in grade 1, all the way to grade 7,” said Bisalomu.
He narrated that he became seriously ill during the grade seven school holidays and was rushed to Mvurwi Hospital for medical attention.
“The doctor knew our bloodline better than anyone else, so when he suspected I had sickle cell disease, I was transferred to Lancet Laboratories in Harare for testing. The results confirmed that I indeed had sickle cell disease. This was in 2019, during the COVID-19 pandemic, which is when the diagnosis was made,” he said.
At that time, Bisalomu’s health condition did not improve and the pain became so severe that it altered his gait.
Despite the challenges he persevered, adapting to his new normal. However his condition worsened, and he developed hip fractures in both hips.
“I began limping, but I had accepted my situation and learned to cope with it. Since the pain had subsided, I could still attend school, albeit with an on-and-off limp. However, things took a turn when I reached Form 2.
“I experienced recurring episodes of excruciating pain, which affected my mobility and forced me to miss school. I was rushed to Karanda Mission Hospital in 2021 and upon arrival my condition didn’t really improve, and I reached a point where the doctors discharged me from the hospital while I was still in pain, because they were unsure of the underlying problem,” narrated Bisalomu.
“I returned home without receiving any help, and my condition worsened. I was unable to attend school and spent most of my days sleeping due to the excruciating pain and harsh winter weather. As a result, I experienced another episode of severe pain, and my parents rushed me to Parirenyatwa Hospital, where I was diagnosed with hip fractures in both hips,” he further narrated.
Bisalomu’s situation was managed at Parirenyatwa Hospital and his pain improved. Upon his discharge, he was informed that the only solution to his hip fractures was to undergo a total hip replacement surgery, but he was only 16 years old at the time.
He added, “The unfortunate situation for me was that the surgery was only reserved for those aged 18 and above. I had to wait until I turned 18, which meant being bedridden for almost three years.
“During this time, I was unable to do anything by myself due to the unbearable pain and fractures. I had to put my education on hold, literally stopping school altogether”.
Despite his condition, he was able to go for regular check-ups, and the doctors suggested that he begin physiotherapy.
“When I started, I was able to use a wheelchair, and by continuing with physiotherapy, I progressed to using a walking frame. By the time I had surgery last year in October at Chitungwiza Hospital I had made significant progress,” said Bisalomu.
“Sickle cell disease is not a death sentence, one can live with it and manage it, I am so motivated to help people understand that children with sickle cell are normal children and need to go to school and clinic. When I came back from this visit, I realized how important it was to share my story and push forward.
Nonetheless, people with sickle cell condition also have to fight stigma surrounding the disease, as the biggest challenge of living with sickle cell disease is discrimination.
People tend to define me by my condition and characterize them as a hopeless person because of it.
Bisalomu’s story highlights the importance of resilience, adaptability and the need for proper medical care. His experiences serve as a reminder that even in the darkest moments, there is always hope for a better tomorrow.
He also said that, “Sickle cell disease may have taken a toll on my life, but it will not define my destiny. I choose to rise above the limitations of my condition, to trust in God’s greater plan and to fulfil the purpose He has for me.
“I am more than my sickle cell. I am a warrior, a survivor and a child of God. I will hold onto hope, faith, and determination, knowing that there is life beyond every diagnosis and that God’s plan for me is one of purpose, joy, and victory.”
