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Secretaría de Salud de Bogotá avanza en manejo de enfermedades huérfanas
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En el marco del día mundial de las enfermedades huérfanas, la Secretaría de Salud de Bogotá llevó a cabo un foro con actores sectoriales, expertos en el tema. Durante el encuentro se presentó información actualizada sobre las rutas de atención disponibles, alternativas de manejo para este tipo de diagnósticos y datos de interés sobre estas condiciones de salud.
“La SDS es pionera en el territorio nacional sobre este tema. Se desarrolló una mesa técnica de Enfermedades Huérfanas desde hace 10 años; actualmente genera programas que tienen que ver con capacitación y diagnóstico sobre esta condición, que busca mejorar las vidas de los pacientes y la de sus familias, así como el desarrollo de actividades que buscan impulsar el conocimiento de las personas sobre este tipo de enfermedades., señaló Ignacio Zarante, médico genetista, asesor de la Secretaría
Distrital de Salud.
El modelo de atención en desarrollo por parte del Distrito tiene como objetivo abordar estas enfermedades con avances notables en modelos especializados existentes. Sin embargo, el desafío principal radica en integrar esta atención en una red unificada, con una ruta definida, que permita abordar tanto la enfermedad como otras condiciones de salud que afectan a esta población, de manera coordinada, articulada y complementaria.
Panorama de las enfermedades huérfanas en la capital del país
Según los datos proporcionados por la Administración Distrital, la enfermedad huérfana más prevalente es la esclerosis múltiple, representando el 8,0% (244 casos), seguida de la displasia pulmonar con el 7,9% (243 casos), la esclerosis sistémica cutánea limitada con el 4,8% (148 casos) y la microtia con el 4,6% (140 casos).
En términos de grupos de edad, la esclerosis múltiple afecta principalmente a personas de 19 años en adelante, con una mayor incidencia en aquellos mayores de 60 años. La displasia broncopulmonar se presenta principalmente en niños menores de 5 años, la esclerosis sistémica cutánea limitada es más común en personas mayores de 27 años, y la microtia afecta principalmente a menores de 18 años.
Por otra parte, se observó que la localidad de Suba presenta la mayor cantidad de casos y que el género femenino es el más afectado. En 2023, en Bogotá se reportaron 4.476 casos.
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