The Face of Gulu beauty queens are leading the charge in advocating for community sensitization on the importance of sickling tests before marriage. They are set to launch a sickle cell awareness campaign on July 29th, 2023, at Kaunda Grounds in Gulu City.
The primary objective of the campaign is to raise awareness about sickle cell disease, an inherited blood disorder that affects the shape of red blood cells, leading to painful complications.
The campaigners also aim to offer material and emotional support to sickle cell patients who often feel marginalized and hopeless. Their focus is on the youth, encouraging them to undergo sickling tests before starting families, as early detection is crucial for proper management.
Furthermore, the campaign seeks to establish a sickle cell clinic within the city and later in villages to assist patients from underprivileged families who cannot afford routine medical care. The campaigners are working with leaders, students, and other stakeholders to join the campaign. They are also planning to have blood donation during the launch, as blood is in high demand by patients suffering from sickle cell.
Jennifer Adong, Miss Talent Gulu University 2022/2023 and chairperson of the organizing committee, emphasized that superstitions about witchcraft still surround sickle cell disease, which hampers awareness efforts.
Sickle cell management is costly, involving daily prophylaxis and medications like antimalarial, folic acid, and penicillin. Patients on hydroxyurea, a drug that reduces pain crises, face even higher expenses due to the drug’s price.
Fiona Mary Acibo, the current face of Gulu and Miss Nwoya 2023/2024, the visionary behind the campaign, expressed the need to dispel ignorance surrounding sickle cell disease. They intend to show solidarity with sufferers during the campaign launch and inspire them to dream big and fulfill their aspirations.
The campaign is set to attract about 500 people and will include a blood donation drive, as blood is in high demand by sickle cell patients.
Dr. Venice Omona, head of the pediatrics department at Lacor Hospital, commended the students’ initiative in raising awareness. The prevalence of sickle cell trait in Gulu is 19.9%, with sickle cell disease at 1%, making the campaign crucial to save lives and improve healthcare.Nwoya has 19.6 % of the population having sickle cell trait while those with the disease is 1.3%. In Amuru 17.2 % have the trait and 1.6% are suffering from it, in Kitgum 17.7 % of the population have the trait, and 0.7% have the sickness.
Dr. Omona said that the burden of sickle cell is high in the sub-region, and that it is important for people to know their genotype before deciding to have children. He said that those who have the sickle cell gene can live normal lives, but that it is important to get early diagnosis and treatment if they do develop the disease.
Betty Aol Ocan, the Gulu Woman Member of Parliament, has also advised girls to take the campaign seriously, given that they are the ones who suffer most while taking care of children suffering from sickle cell. The students are planning to hold a series of events to raise awareness about sickle cell disease, including a walk, a talk show, and a blood drive. They are also hoping to start a sickle cell support group in Gulu.
The campaign’s success relies on the community’s active participation and understanding the importance of early testing and treatment for sickle cell disease.
Dr. Omona said at Lacor Hospital where he works the sickle cell clinic which opened in 2009 has cumulatively registered more than 2000, with 650 active patients now. She said these statistics should help inform the population about taking the importance of taking the initiative to test for sickle cell since it is not being widely done by health facilities.
Dr. Omona encourages partners who already have babies without knowing their genotype to seek early diagnosis or newborn screening which helps one to start early treatment, and in turn, improves their quality of life.
About 33,000 babies are reportedly born with the disease annually in Uganda.
However, 80 percent of these die before the age of five due to disease complications, while about 16 percent of early infant mortality in the country is attributed to the disease, according to the Ministry of Health figures.