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Quase 14 mil pessoas vivem com Hemofilia no Brasil, segundo os últimos dados do Ministério da Saúde. Esta condição hereditária e rara é caracterizada por um Distúrbio Hemorrágico em que o sangue não coagula corretamente, levando as pessoas a sangrarem mais tempo e em maior frequência que o normal. Em um recorte de pacientes com Hemofilia A por estados, por exemplo, São Paulo tem 20,5% dessa população, enquanto Rio responde por 9% e Minas Gerais 8,7% de pessoas com a condição.
Sem os cuidados adequados, a Hemofilia pode levar a danos permanentes, especialmente nas articulações, comprometendo a qualidade de vida dos pacientes. A Dra. Francine Doty Campoy, Médica Hematologista e Pediatra do HEMOSC Blumenau, desvenda a seguir alguns dos maiores mitos sobre a condição.
“As pessoas com Hemofilia têm apenas sangramentos externos, provenientes de cortes e arranhões”.
MITO. Além dos cortes e outras lesões externas, que são mais fáceis de identificar, existe a possibilidade de pessoas com Hemofilia terem sangramentos internos. Lesões internas que provocam hemorragia, como hematomas musculares e hemartroses, causam muita dor e podem deixar sequelas permanentes. Ainda pode ocorrer, em menor frequência, sangramentos intracranianos e abdominais, que trazem risco de vida.
Por isso, é muito importante que o paciente e aqueles ao seu redor, estejam atentos e tomem os cuidados adequados. Complicações podem piorar quando o paciente não tem acesso venoso, dificultando a administração eficiente do tratamento e aumentando o risco de sangramentos prolongados e a necessidade de intervenções médicas mais complexas.
“A Hemofilia afeta apenas pessoas do sexo masculino”.
MITO. Apesar de ser uma condição genética ligada ao Cromossomo X, a Hemofilia também pode atingir mulheres, embora seja algo raro. Isso acontece devido a mutações genéticas ou em casos específicos, por exemplo, se uma mulher cujo pai tem Hemofilia tiver filhos com um homem Hemofílico, o casal pode ter uma filha com a condição.
“Pessoas com Hemofilia podem realizar atividades físicas ou praticar esportes quando tratadas”
VERDADE. Com o tratamento preventivo adequado, as pessoas com Hemofilia podem praticar diversos esportes, como natação e corrida, mas em geral se recomenda que pratiquem atividades de menor impacto e contato físico. Exercícios mais intensos ou radicais, que podem colocar em risco até mesmo uma pessoa sem a condição, não costumam ser recomendados.
No entanto, ainda são analisadas inovações com alta eficácia na prevenção de sangramentos. Com a ampliação do acesso às novas tecnologias, uma nova realidade onde os pacientes pratiquem esportes de alta intensidade ou até mesmo se tornem grandes atletas pode ser possível.
“A Hemofilia é diferente em pessoas com a condição”
VERDADE. A Hemofilia pode ser dividida em dois tipos: a Hemofilia A, a forma mais comum da condição, que resulta da falta do Fator VIII da Coagulação, e a Hemofilia B, que se deve à falta do Fator IX. Os sintomas da Hemofilia podem variar, dependendo do nível de Fator deficiente, podendo variar entre leve, moderada ou grave.
Além disso, pessoas com Hemofilia podem desenvolver inibidores ao Fator, enfrentando desafios adicionais nos cuidados com a doença. Os pacientes com Hemofilia que desenvolvem inibidores ao Fator têm anticorpos que neutralizam o efeito do Fator administrado, tornando o tratamento de reposição do Fator ineficaz. Nesses casos, os médicos precisam recorrer a terapias alternativas, e os pacientes frequentemente necessitam de um plano de tratamento personalizado e multidisciplinar, para não enfrentar maior risco de sangramentos e complicações.
Existem testes específicos para comprovar a existência de inibidores, como o Coagulométrico e Cromogênico, por meio de exame de sangue que detectam a presença de anticorpos que interferem na coagulação sanguínea.
“Pessoas com Hemofilia têm uma expectativa de vida curta”
MITO: Atualmente, com a ampliação do acesso aos tratamentos e cuidados adequados, as pessoas com Hemofilia podem ter uma expectativa de vida semelhante às pessoas sem a condição. Nos Hemocentros, é notável o aumento no número de pessoas idosas com Hemofilia, inclusive pessoas com mais de 70 anos.
Quando se fala em qualidade de vida, também percebe-se ganhos importantes nos últimos anos, com a chegada de inovações que possibilitam mais qualidade de vida e autonomia para os pacientes.
“O tratamento da Hemofilia só pode ser realizado por profissionais de saúde em Centros Especializados.”
MITO: Hoje, o tratamento preventivo, conhecido como profilaxia, pode ser realizado no próprio domicílio dos pacientes. As pessoas com Hemofilia e suas famílias são treinadas por equipes de Enfermagem, e o tratamento domiciliar vira uma rotina em suas vidas, o que é bastante benéfico.
Por se tratar de uma condição hereditária, as famílias com histórico de Hemofilia devem se preparar antes mesmo do nascimento do filho. Mas nos casos em que não há histórico familiar (de acordo com relatório da Federação Mundial de Hemofilia¹ [WFH] cerca de 30% dos casos são do tipo “denovo”, ou seja, inéditos em determinados organismos), a disseminação de informações corretas sobre a condição é essencial para que os profissionais de saúde da Atenção Primária e o público em geral saibam reconhecer os sintomas da Hemofilia, buscando prontamente o diagnóstico e tratamento adequado.
Fonte: ¹Federação Mundial de Hemofilia (WFH) – https://www1.wfh.org/publications/files/pdf-2142.pdf
Foto: Divulgação
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