Editorial : Sickle cell patients suffer undue stigmatization

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World Sickle Cell Day is marked on 19th June every year ever since it was officially designated by the UN in December, 2008, and first commemorated in June, 2009.

In Ghana, about 15,000 babies are born with Sickle Cell Disease (SCD) every year. SCD is a group of inherited red blood cell disorders. The sickle cells die early, which causes a constant shortage of red blood cells.

As part of its public awareness activities to mark this year’s World Sickle Cell Day, the Sickle Cell Foundation of Ghana (Foundation) organized a virtual lecture via zoom webinar which brought together hundreds of health workers, families, persons living with SCD and health experts to deliberate on management of the disease amid the COVID-19 pandemic.

Professor Isaac Odame, Alexandra Yeo Chair in Haematology at the University of Toronto, Canada and Medical Director, Global SCD Network, in a presentation on ‘Effects of COVID-19 on a Person with Sickle Cell Disease’ noted that “the symptoms of COVID-19 and those of SCD are not very different.

The symptoms include fever, chest pains, difficulty breathing, and pneumonia (acute chest syndrome in SCD), end organ damage and kidney failure. According Professor Isaac Odame, persons living with SCD are at a high risk for severe COVID-19, hence the advice for serious adherence to COVID-19 preventive measures.

Contributing to the discussion, Dr. Kofi Anie, MBE, Consultant Psychologist at London North West University Healthcare NHS Trust Haematology and Sickle Cell Centre, Central Middlesex Hospital, noted that due to lack of knowledge about the disease, myths, and misconceptions and the perception around sickle cell disease is still not favorable.

For instance, the use of the term ‘Sickler’ by many creates the perception that sickle cell disease patients are always sick. He cautioned about stigmatization saying: “stigma may only cause loneliness, worry, and guilt; it makes people feel devalued, shunned, embarrassed and isolated”.

Even as Ghana’s COVID-19 case count rises exponentially and the attendant amazing recoveries, the anxiety among health workers, care-givers and officialdom is the growing stigmatization of COVID-19 patients, even those who have fully recovered, is impeding the fight against the virus.

According to the virtual lecture on sickle cell patients, the story is no different for SCD since they also face stigmatization. Being ill does not mean one is cursed, or consumed by an evil spell as some of our traditional myths would want to have many believe, so that uninformed approach to perceiving illness through the prism of bad omens has to be discarded and science and knowledge-based research adopted.

That is the only way to find solutions to the numerous ailments that afflict humankind.

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