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Esclerosis múltiple, la enfermedad huérfana con más pacientes en Colombia
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La Esclerosis Múltiple -EM- es una enfermedad neurológica crónica que causa graves lesiones en el cerebro y la medula espinal. Es, además una condición autoinmune por lo que afecta directamente la mielina (sustancia que recubre y protege las conexiones de las neuronas), cuando estas se deterioran los impulsos nerviosos se afectan desembocando en una gran variedad de síntomas.
las manifestaciones clínicas suelen variar de un paciente a otro, aunque han logrado identificarse algunos síntomas frecuentes para la enfermedad, entre los que se encuentran: alteraciones del habla y la visión, pérdida del equilibrio y la fuerza, dificultad para caminar, temblor o espasmos en las extremidades, mareo, fatiga y problemas en el control de esfínteres.
En el mundo existen cerca de 2.5 millones de personas con Esclerosis Múltiple, siendo de dos a tres veces más frecuente en mujeres que en hombres, según datos de la Federación Internacional de Esclerosis Múltiple. Varios estudios indican que hay factores genéticos que hacen que algunas personas sean más propensas a esta enfermedad, pero no existe evidencia de que la EM se herede directamente.
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Adicionalmente, la Federación indica que la mayoría de casos se diagnostica en personas de 20 a 40 años, por lo que se posiciona como una de las principales causantes de discapacidad entre los jóvenes.
Hasta el momento se han identificado al menos 5 clases de EM:
- Esclerosis múltiple remitente-recurrente.
- Esclerosis múltiple progresiva primaria.
- Esclerosis múltiple progresiva secundaria.
- Esclerosis múltiple progresiva recidivante o recurrente.
- Esclerosis múltiple benigna.
Esclerosis Múltiple en Colombia
De otro lado, según la Asociación Colombiana de Neurología en Colombia hay una prevalencia de 7 casos por cada 100.000 habitantes, lo que significa que en el país habría poco más de 3.000 casos. Una cifra baja comparada con países como Uruguay que tiene un índice de prevalencia de 30 casos por cada 100.000 habitantes, las tasas de prevalencia son incluso mayores en países nórdicos.
A continuación, se detallan el número de personas atendidas vs el número de prescripciones para pacientes con esclerosis múltiple según la herramienta MIPRES (servicios y tecnologías financiados con presupuestos máximos):
| Año | Número de personas | Número de prescripciones |
|---|---|---|
| 2019 | 1.466 | 3.071 |
| 2020 | 1.283 | 2.837 |
| 2021* | 238 | 273 |
| Total | 2.987 | 6181 |
Finalmente, El Dr. Jairo Quiñones Bautista, neurólogo de la fundación Valle del Lili, explica que el 85% de los pacientes con Esclerosis Múltiple presentan recaídas y periodos de mejoría completa (sin secuelas). Sin embargo algunos pacientes, después de varias recaídas van presentando progresión de la enfermedad, con discapacidad secundaria.
Aunque esta enfermedad no tiene un tratamiento curativo, existen diferentes opciones terapéuticas que pueden controlarla. Por ejemplo, la Federación Internacional de Esclerosis Múltiple, manifiesta que hay 12 tratamientos que han mostrado efectividad para disminuir la actividad de la enfermedad, que además están autorizados por la reguladora estadounidense FDA:
Inyectables: Avonex, Betaseron, Copaxone, Extavia, Plegridy y Rebif.
Orales: Aubagio, Gilenya y Tecfidera.
Infusión: Novantrone y Tysabri.
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