Parents, children and doctors in the fight against Sickle Cell Disease

From the moment a child or adolescent is diagnosed with sickle cell disease, in addition to the diagnosis having a great emotional impact on the family, a care routine begins that involves not only the patient, but an entire protection network. The assistance of a pediatrician and an SCD specialist – usually a hematologist – are essential. But it is also important to monitor the parents, the involvement of the teachers and the attention of the children themselves, through a self-care routine.1

Union of efforts to face a common and at the same time little known disease.

According to data from the Ministry of Health's National Neonatal Screening Program, 3,500 children are born in Brazil each year with sickle cell disease and about 200,000 with sickle cell trait.2 Even so, until recently this was considered a "neglected" disease, that is, a disease for which there was no interest in research for its treatment or cure. This situation, however, has been progressively changing as a result of new research and drugs that are contributing to the maintenance of a better quality of life for patients, with a decrease in painful crises and greater survival.

Ignorance and prejudice.

One of the main difficulties faced by parents and children and adolescents who are victims of the disease is the lack of knowledge about what SCD is and the patients' needs, in addition to society's prejudice. Some children report that they sometimes feel pain during class, for example, and cannot go out to get water or go to the bathroom. When they miss classes and are unable to follow the subjects due to frequent hospitalizations, parents are obliged to submit medical requests and certificates.3 Therefore, in the fight against Sickle Cell Disease, it is important to combine efforts between parents (natural caregivers), pediatricians , hematologists, nurses, teachers and the patients themselves, who must know how to identify the symptoms that trigger the crises. But this struggle also involves other actors such as psychologists, dentists, nutritionists, physiotherapists and social workers.

A learning opportunity for everyone involved.

Despite the little knowledge about the disease, FD is a learning opportunity for parents and everyone involved with their children's health. An experience that can teach a lot about love, dedication and hope. Being a chronic genetic alteration that needs treatment from early childhood (early diagnosis of Sickle Cell Disease is usually made in neonatal screening with the performance of the Foot Test), it is essential to raise awareness and guide patients, family members and health professionals about the care with the disease, so that they can carry out adequate treatment from the beginning and a more humanized care and follow-up.3

The hope of new drugs

Among all the active ingredients available to combat Sickle Cell Disease, hydroxyurea has proved to be the most effective and the one that provides a better quality of life for patients.4 Therefore, the approval by Anvisa, in November 2021, of the first treatment based on hydroxyurea with indication in the package insert and precise and safe dosage for patients from 2 years of age, it is one of the great allies in the fight against SCD. It is a more comfortable and safer therapy, which allows for greater effectiveness and better adherence to treatment, being a reason for hope for doctors, family members and patients. Masters is also on the side of parents and children in this fight, facilitating access to the new medicines and treatments available.

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References:

Government of Bahia. Parents accompany the care of their children with sickle cell disease at Fundação Hemoba. Available at: http://www.bahia.ba.gov.br/2020/08/noticias/saude/pais-acompanham-cuidados-dos-filhos-com-doenca-falciforme-na-fundacao-hemoba/
Accessed in February 2022.

Paulista School of Medicine – UNIFESP. National day to fight for the rights of people with Sickle Cell Diseases. Available at: https://sp.unifesp.br/epm/medicina/noticias/dia-nacional-de-luta-pelos-direitos-das-pessoas-com-doencas-falciformes
Accessed in February 2022.

Government of Rio de Janeiro. Health Department. Hemorio. Available at: http://www.hemorio.rj.gov.br/Html/PDF/Estudante_DF_JSV.pdf
Accessed in February 2022.

Fiocruz. Sickle cell disease and the use of hydroxyurea. Available at: https://portal.fiocruz.br/video/doenca-falciforme-eo-uso-da-hydroxyureia
Accessed in February 2022.