The need for raising awareness about sickle cell disease and the challenges patients and families face when confronting the disease has again been reiterated.
The call was made at the annual public lecture on sickle cell disorder marking World Sickle Cell Day 2023.
Kodjo Soroh, Medical Director, Sub-Saharan Africa, Pfizer, commented: “Sickle cell disorder though categorised as a rare disease, however, is not rare in our society because Nigeria is the epicentre of sickle cell disease as 4-6million people are living with this disorder. Most of us are passionate about sickle cell disorder and many of us have one or two personal stories to tell about the disease.
“Today, we are not where we used to be decades ago before the evolution of science when affected children were termed ‘ogbanjes’ due to the high mortality rate of babies born with the disease. Nowadays, science has significantly evolved to reduce mortality and morbidity through mass media campaigns, counselling, early diagnosis, and breakthrough medicines.
“I would like to recognize the leadership of Sickle Cell Foundation Nigeria, all relevant stakeholders and most importantly the sickle cell warriors and caregivers who have displayed solidarity against sickle cell disorder in Nigeria and Africa as a whole.
“Nevertheless, more work needs to be done to identify the underserved within the communities and reduce the prevalence estimated at 150,000 babies born with sickle cell yearly. I call for joint efforts to prevent complications and give adequate interventions through consistent public awareness and education, early diagnosis, and prompt interventions.
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“In our commitment to change a billion lives per year, Pfizer has partnered with Sickle Cell Foundation Nigeria to celebrate world sickle cell disease day and stand in solidarity with our warriors.
“I urge the government and all relevant stakeholders to support this course to improve the quality of lives of the patients and save more lives because indeed sickle cell disorder is not a death sentence.”
Tunde Afolabi, chairman of the Sickle Cell Foundation of Nigeria, said: “World Sickle Cell Day is an international awareness day commemorated every year on 19 June, to alert the global public about sickle cell disease as various global and local organizations come together during this day to promote awareness campaigns and activities which recognise the need for early diagnosis of sickle cell disease, its treatment, and preventive tips to avoid the ailment.”
He noted that “Sickle cell disease is one of the majorly occurring monogenic diseases with the majority of them seen in low- and middle-income countries. Dedicating a specific day for sickle cell disease ensures the comprehensive awareness that could bring out across individuals, populations, services, and systems levels.”
Each year, on June 19, countries all over the world mark World Sickle Cell Disease Day, which was officially adopted by the General Assembly of the United Nations, recognizing Sickle Cell Disease as a public health concern and promoting education about this genetic condition in 2008.
This year 2023, World Sickle Disease Day’s theme was ‘Building and strengthening Global Sickle Cell Communities, Formalising New-born Screening and Knowing your Sickle Cell Disease Status’, a call to recognise the first step (understanding the genotype in infants and adults) in fighting sickle cell disease.
