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Historia de la hemofilia: una enfermedad que afecta a más de uno
History of hemophilia: a disease that affects more than one
História da hemofilia: uma doença que afeta mais de um
DOI:
https://doi.org/10.15446/rcciquifa.v54n3.120474Palabras clave:
Hematopatología, episodios de sangrado, factores de coagulación, enfermedad rara, terapia génica (es)Hematopathology, bleeding episodes, coagulation factors, rare disease, gene therapy (en)
hematopatologia, episódios de sangramento, fatores de coagulação, doença rara, terapia genética (pt)
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Introducción: La hemofilia es una enfermedad rara que, en general, afecta a más de un millón de personas. Su atención ha presentado históricamente muchos retos, y aún lo hace, por lo cual es de importancia para la población general conocer la historia de esta patología. Objetivo: Describir los hitos más importantes en el entendimiento y la atención médica de la hemofilia, por lo cual se realizó una búsqueda bibliográfica en artículos científicos y páginas de internet oficiales. Con esta información, se construyó una revisión narrativa sobre la historia de la hemofilia. Resultados: La hemofilia ha sido estudiada desde la edad antigua, pero sólo cobró conciencia popular cuando se dio a conocer que era una enfermedad que afectaba a la realiza inglesa. A partir de ahí, su atención médica ha evolucionado, teniendo que superar diversos retos. Hoy en día los retos persisten, siendo la aparición de inhibidores uno de los más importantes, pero también existen muchas más opciones terapéuticas, como las terapias génicas, que se alzan como tratamientos que prometen por primera vez en la historia curar la enfermedad, y no simplemente tratarla. Conclusiones: La atención a la hemofilia ha presentado diversos retos a lo largo de la historia, y a pesar de que hoy existen grandes avances tecnológicos, no está garantizado que todos los afectados puedan tener acceso a ellos.
Introduction: Hemophilia is a rare disease that, overall, affects more than a million people. Its care has historically presented many challenges, and still does, which is why it is important for the general population to know the history of this pathology. Objective: Describe the most important milestones in the understanding and medical care of hemophilia, for which a bibliographic search was carried out in scientific articles and official internet pages. With this information, a narrative review of the history of hemophilia was constructed. Results: hemophilia has been studied since ancient times, but it only gained popular awareness when it became known that it was a disease that affected the English culture. From there, medical care has evolved, having to overcome various challenges. Today the challenges persist, with the appearance of inhibitors being one of the most important, but there are also many more therapeutic options, such as gene therapies, which stand as treatments that promise for the first time in history to cure the disease, and not just treat it. Conclusions: Hemophilia care has presented various challenges throughout history, and despite significant technological advances today, it is not guaranteed that all those affected will have access to them.
Introdução: A hemofilia é uma doença rara que, em geral, afeta mais de um milhão de pessoas. Sua atenção historicamente apresentou muitos desafios e ainda assim, por isso é importante para a população em geral conhecer a história dessa patologia. Objetivo: Descreva os marcos mais importantes no entendimento e no atendimento médico da hemofilia; portanto, uma pesquisa bibliográfica foi realizada em artigos e sites científicos institucionais ou especializados com autoridade autorizada em hemofilia e saúde pública. Com essas informações, foi construída uma revisão narrativa da história da hemofilia. Resultados: A hemofilia foi estudada desde a idade antiga, mas só se tornou popular quando foi anunciado que era uma doença que afetou o inglês. A partir daí seus cuidados médicos evoluíram, tendo que superar vários desafios. Hoje, os desafios persistem, sendo a aparência dos inibidores um dos mais importantes, mas também existem muitas opções terapêuticas, como terapias genéticas, que são levantadas como tratamentos que prometem pela primeira vez na história a curar a doença e não simplesmente tratá-la. Conclusões: A atenção da hemofilia apresentou vários desafios ao longo da história e, embora existam grandes avanços tecnológicos hoje, não é garantido que todos os afetados possam ter acesso a eles.
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