Joining forces to prevent sickle cell disease in Togo

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Extract from the article: Every June 19, the world commemorates World Sickle Cell Day. To mark the occasion in Togo, the Association Togolaise de Lutte contre la Drépanocytose (ATLD) and the Ligue Togolaise des Consommateurs (LTC) raised awareness of sickle cell disease, a...

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Every June 19, the world commemorates World Sickle Cell Day. To mark the occasion in Togo, the Association Togolaise de Lutte contre la Drépanocytose (ATLD) and the Ligue Togolaise des Consommateurs (LTC) raised awareness of sickle cell disease, a genetic disorder that represents a major public health challenge in Togo.

Currently, 16% of Togolese are carriers of at least one sickle cell gene, representing over one million individuals. Of these, 4% are symptomatic, i.e. around 320,000 people who experience regular episodes of the disease and require constant care.

According to Dr. Kponou Mathieu Tobossi, President of ATLD, "an ailment that already affects 16% of the Togolese population is already too much to keep quiet about. Young couples need to make the right choice to curb the spread of this scourge. The only way to prevent the disease is to screen for it and make the right choice of partner"

The Centre National de Recherches et de Soins aux Drépanocytaires (CNRSD) in Lomé is the reference center for the treatment of sickle cell disease, treating an average of 370 patients a month, and screening pregnant women.

A daily life of struggle and suffering

Attacks are unpredictable, and treatments are primarily aimed at relieving pain, not curing the disease. The frequent need for blood transfusions adds to the complexity of management, especially as blood resources are often limited. Clinical manifestations vary, and include hemolytic anemia, pallor, persistent fatigue, jaundice with yellow eyes and skin, and dark urine.

Serious complications can include kidney and liver failure, osteoporosis, osteoarthritis and pulmonary hypertension. By all accounts, the disease hurts financially and sociologically. Treatment reduces pain temporarily, but it often returns. Families bear the burden of frequent hospitalizations and sleepless nights.

An action plan focused on prevention and advocacy

The ATLD intends to intensify its lobbying of national health institutions to obtain free screening, particularly for young people and pregnant women. "Screening must be free. If the test is not carried out during pregnancy, it must be done as soon as the child is born, so that the child can be cared for as early as possible. Children who are treated early will be better able to survive and manage the disease," insists Dr Tobossi.

Under its action plan, ATLD aims to mobilize partners to obtain the financial resources needed to implement these initiatives. The ultimate goal is to significantly reduce the spread of sickle cell disease in Togo.

 LCT president Sogadji Emmanuel pleaded with the state to fund the fight against the disease. "Sickle cell disease affects many people, and it's ignorance that contributes to its spread. We particularly appeal to young couples to get screened to avoid bringing sick children into the world," he said. He also called on the State to set up sickle cell disease centers in all prefectures, subsidize medicines and provide a support fund for these centers.

The ATLD, created in September 2013, has carried out various activities such as awareness campaigns, the distribution of medicines and conferences on the impact of sickle cell disease on eyesight.

Esther KOLANI