Día mundial de la Hemofilia: 70 años de La Fundación de hemofilia Argentina

Día mundial de la Hemofilia: 70 años de La Fundación de hemofilia Argentina

Una nueva jornada de reflexión se realizó en nuestro país por el Día Mundial de la Hemofilia. El lema elegido para este 2015 fue “Formar una familia de apoyo” para concientizar sobre las alteraciones de la coagulación en la sangre y la importancia de la contención a las personas que padecen la enfermedad.

Hace 70 años que la Argentina cuenta con la primera organización en el mundo especializada en la hemofilia, La fundación de Hemofilia Argentina que brinda una asistencia integral en el tratamiento de pacientes con esta enfermedad.

La Directora  Médica de la Fundación,  la Dra. Daniela Neme sostiene  “Tenemos registrados un total de 2500 pacientes en el país, y  asiduamente atendemos a unos 1300. La fundación cuenta con una red de profesionales,  hospitales y centros en todo el país, que nos permite llegar a los pacientes que viven en el interior”.

La Institución cuenta con especialidades profesionales que se dedidican a la atención de pacientes, tales como, traumatología, kinesiología, servicio de internación,  psicología, asistencia social y odontología. “Estamos íntegramente abocados al paciente con hemofilia, atendiendo su aspecto hematológico y a la atención multidisciplinaria” afirma Neme.

La educación forma parte de las actividades de la Fundación,  se brindan talleres a padres, pacientes y docentes, quienes  reciben el asesoramiento indicado por los profesionales.  Cuidados y recomendaciones a maestras y  autoridades  escolares “para desmitificar conceptos equivocados, porque un niño puede estar en la escuela  y compartir todas las actividades escolares” indica la especialista y recomienda evitar situaciones de riesgo como la práctica de deportes de contacto y actividades bruscas,  “esto no implica que el niño no pueda desarrollarse de forma normal”.  Además cuentan con un taller destinado a familiares y pacientes durante el tratamiento  que tiene como objetivo la administración del producto  via endovenosa, “les enseñamos a la infusión y a auto infusión de los concentrados de factor 8 o 9, según el caso ”  enfatiza la Directora médica de la Fundación.

La Fundación recibe un subsidio nacional que le permite llevar a cabo los programas y las actividades para mejorar la calidad de vida de los pacientes hemofílicos.  Los profesionales atienden  las 24 horas del día, para consultas y urgencias 0800-555-HEMO y en el edicifio en la calle Soler 3485 CABA.  

 Por Alita Prieto

Omar Suárez

Formado en la Universidad de Bs. As - Desde chico descubrió su vocación por el periodismo - Hace más de 30 años trabaja en distintos medios de comunicación regionales; Conductor de distintos programas de radio y realiza entrevistas por el canal de YOUTUBE alternativa en papel. Es parte del quipo periodístico de Tigre de mi Vida - Programa partidario del club atlético Tigre, además es: director, creador y propietario del portal: www.alternativaenpapel.com.ar.

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