EXPERIENCE REPORT OF THE RESEARCH WITH YOUNG PEOPLE WITH SICKLE CELL DISEASE FROM FEIRA DE SANTANA-BAHIA

Abstract

In Brazil, where racism kills indiscriminately, we undoubtedly occupy the level of an alarming number of deaths, whether by firearms, at the hands of the state, hunger and lack of care and basic health care. Sickle cell disease (SCD) is not a rare disease, and it is up to us to make the indexes visible in Feira de Santana. Objective: to report the experience of a doctoral research that evaluated physical fitness and biomarkers in children and adolescents with SCD in the city of Feira de Santana. Results: 30 young people participated, and all declared themselves to be black and brown, with a family income of up to two monthly minimum wages. Performance in the walking assessment was considered moderately reduced for 50%, normal for 33.3% and severely altered for 16.7% of the participants. Motor tests also showed levels below the references for individuals without the disease in the same age group: 80% were weak for upper limb strength; 75% weak for lower limb strength and 90% weak for agility. Conclusion: The low income of families belonging to the black population revealed the situation of poverty and the difficulties in going to the reference center. Unfavorable clinical conditions such as low peripheral oxygen saturation at rest and pallor were also observed. The most striking observation was the report of hunger by some families. Even facing the distance and the difficulties to reach in the evaluations, mothers and children revealed that they had not eaten until the time of the research.