Hemophilia is a hereditary disease that manifests exclusively in males, as the mutation that causes the disease is located on the X chromosome.
Characterized as a genetic and hereditary disorder that affects blood coagulation, hemophilia’s main symptom is bleeding, whether in the muscles, skin, nose, or gums, caused by an injury or for no apparent reason. The first symptoms appear in the first year of life when the baby starts walking and falling, presenting bruises, popularly known as purple spots, as hematologist Verônica Guedes warns. She works at the Hemocentro de Alagoas (Hemoal), a reference in the state for the diagnosis and treatment of the disease.
Therefore, the specialist advises parents to pay attention to children in the first year of life and, in case they notice the symptoms described by her, seek guidance from the pediatrician, who, upon suspecting hemophilia, will refer the baby for a consultation at the Hematology Center of Hemoal. When seen by a hematologist, clinical and laboratory tests will be performed, and if the diagnosis is positive, the patient will be assisted by the multidisciplinary team of the organization, formed by hematologists, nurses, dentists, pharmacists, physiotherapists, nutritionists, psychologists, social workers, and nursing professionals.
“Hemoal is considered a national reference for the care of Alagoan hemophiliacs, and this title was even confirmed by the Brazilian Hemophilia Federation, which, during an inspection at the Hematology Center, classified it as an example of hemophiliac care in Brazil. Hence, all parents who have their children diagnosed with the disease should be aware that they will have efficient, qualified, and humanized care, offering quality of life to patients, as there is still no cure,” emphasized Verônica Guedes.
Hemophilia manifests exclusively in males, as the mutation that causes the disease is located on the X chromosome. Women do not develop the disease, only being carriers of the genetic defect. Presented in two types, A occurs due to a deficiency in coagulation factor VIII, while B is characterized by a deficiency in factor IX, as explained by the hematologist from Hemoal.
Regarding the treatment of hemophilia, it occurs through the replacement of the antihemophilic factor, where the patient with hemophilia A receives the factor VIII molecule, while the one affected by hemophilia B uses the factor IX molecule. “It is worth noting that, in addition to multidisciplinary care, Hemoal distributes the medication free of charge, provided by the Ministry of Health. Therefore, if the diagnosis and the start of treatment are early, the chances of sequelae caused by bleeding decrease,” emphasizes Verônica Guedes.
Among the more than 200 hemophiliacs from Alagoas is Claudenisson Santos, 41 years old, who has hemophilia B and has been assisted by the Hematology Center of Hemoal since the diagnosis. “Thanks to the multidisciplinary care I receive from Hemoal and prophylaxis, with the medication provided by the SUS [Unified Health System], I lead a peaceful life and live well with the disease,” he said, proving that specialized care makes a difference in having a productive life.
