Granadilla | La joven Virag sufre una enfermedad rara y teme por su vida

Virag es una joven húngara de 17 años, que lleva viviendo 8 meses en Tenerife con su familia. Lamentablemente la joven padece una enfermedad rara denominada DOCK8 (dedicator of cytokinesis 8 protein) que es una forma de inmunodeficiencia de linfocitos T y B caracterizada por infecciones virales cutáneas recurrentes, susceptibilidad a tumores y niveles elevados de inmunoglobulina E en suero.

Su enfermedad empezó a manifestarse desde muy pequeña, presentando múltiples problemas de salud y sometiéndose a innumerables tipos de pruebas que finalmente dieron como diagnostico una enfermedad de las denominadas raras, llamada DOCK8, de la cual sólo se conocen otros 10 o 12 casos en el mundo.

Debido a su delicado estado Virag se encuentra actualmente hospitalizada, por lo que los padres tienen que turnarse para desplazarse desde San Isidro (donde residen actualmente) hasta el Hospital Nuestra Señora de Candelaria y no dejarla sola, lo que además se hace incompatible con el trabajo, todo ello sumado a la falta de fluidez del idioma, dificulta aún más el solicitar o conseguir ayudas.

La familia manifiesta haber acudido en varias ocasiones a los organismos pertinentes a solicitar ayuda, pero lo único que les otorgan son vales para comida. Teniendo en cuenta el alto coste que suponen los tratamientos, el desplazamiento, la imposibilidad de trabajar normalmente y sus bajos recursos, la familia está desesperada y pide abiertamente que quién pueda les eche una mano para poder paliar un poco los gastos.

Además un dato muy alarmante es que la joven ya tiene 17 años, y según diagnosticaron los médicos y comunicaron a sus padres, su esperanza de vida ronda los 18 o 19 años, por este motivo y cercanos a esas fechas, los padres viven con el miedo en el cuerpo.

Enfermedad

La inmunodeficiencia provocada por déficit de DOCK8 (dedicator of cytokinesis 8 protein) es una forma de inmunodeficiencia de linfocitos T y B caracterizada por infecciones virales cutáneas recurrentes, susceptibilidad a tumores y niveles elevados de inmunoglobulina E en suero.

La enfermedad se puede manifestar de diferentes formas. Durante la infancia los síntomas principales pueden ser dermatitis atópica, graves alergias, asma, infecciones de las vías respiratorias, bronquitis y neumonía, y extensas infecciones virales y bacterianas. En el caso de la pequeña Virag, la enfermedad ataca directamente a sus pulmones, al cerebro, y además le provoca fuertes erupciones cutáneas.

Esta es una enfermedad incomprensible para la ciencia médica. Actualmente doctores de Madrid, Budapest y New Castle también están investigando la enfermedad para dar con un tratamiento que acabe con ella. Sin embargo, al haber pocos casos registrados en el mundo, las investigaciones son prácticamente escasas.

La familia ha iniciado una campaña para recaudar fondos en Facebook.

https://www.facebook.com/donate/2257510294271473/

 

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