Health ministers from across Africa have pledged to raise awareness about sickle cell anaemia, a debilitating, inherited blood disorder that affects millions of people on the continent and is especially prevalent among Africans.
The 72nd World Health Organization (WHO) Regional Committee for Africa meeting last week made the decision to “raise awareness, strengthen prevention, and care to reduce the toll of sickle cell disease.”
According to the WHO, “1 000 children are born with the disease in Africa every day, making it the most prevalent genetically-acquired disease in the region.”
“More than half of these children will die before the age of five, most often as a result of infection or severe anaemia.”
Dr Matshidiso Moet, the WHO’s regional director for Africa, stated that more needed to be done on the continent to “improve access to treatment and care” for patients suffering from the disease.
“Despite the availability of proven cost-effective interventions for prevention, early diagnosis, and management of sickle cell disease, most African countries lack the necessary resources to provide comprehensive care for people with sickle cell disease.” “We need to bring this disease to light and help improve the quality of life for those who live with it,” Moet said.
According to the organisation, 66% of the 120 million people suffering from sickle cell disease worldwide are from Africa, with over 300,000 babies born each year with severe haemoglobin disorders as a result.
Sickle cell disease, also known as sickle cell anaemia, is more common in the black population, according to Dr Shahroch Nahrwar, a clinical haematologist at Melomed Tokai private hospital in Cape Town.
“You got it from your parents.” It is a red blood cell disease that causes sickle cells… they have the shape of a sickle, and they are very stiff sickles that can obstruct blood flow and, beyond that, obstruction. “A lack of blood flow and hypoxemia, which means a lack of oxygen, can cause pain, which we call a vaso-occlusive painful crisis,” he explained.
The most common symptoms, according to Nahrwar, included but were not limited to pain in the arms, legs, ribs, chest, abdomen, and back.
More testing was performed to rule out conditions such as HIV, malaria, and leukaemia, and as a result, sickle cell testing was ordered, and I was diagnosed with sickle cell anaemia.”
Phiri said he had his first sickle cell “crisis” when he was three years old, which resulted in acute chest syndrome, a disease complication that causes chest pain, coughing, fever, and low oxygen levels, among other symptoms.
“I received my first blood transfusion and spent a fortnight in the hospital before recovering completely.” From the age of three to fifteen, I was able to deal with the majority of my crises without incident.
“In 2017, at the age of 15, I had complications from an appendix removal, which resulted in a second dose of severe acute chest syndrome and a 12-day stay in the intensive care unit.”
“Since then, there have been more hospitalizations due to complications such as pneumonia, stomach ulcers, infections, and other ailments.” I’ve also had an autosplenectomy, which is performed when a disease causes the spleen to shrink and become non-functional.”
He stated that, while medication had assisted him in managing the disease, maintaining a balanced lifestyle while learning to cope with stress was critical in preventing another “crisis.”
“There are many triggers to a crisis in sickle cell, and dealing with them as you grow becomes very important.” Dealing with stress was a significant trigger. Most of the time, stress has a negative impact on me, and learning coping mechanisms such as breathing techniques, yoga, mindfulness, and being organised and well-planned can be beneficial, especially as you get older.
“Because sickle cell is an invisible illness, I cannot directly physically see the effect it has on my body, which leads to many misunderstandings, such as being labelled lazy when you’re chronically fatigued, being labelled a drug seeker when the intense pain is frequent, and feeling so isolated and lonely when no one understands what you’re going through,” he explained.
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