gretaNome: Greta
Nata il: 16/06/2005 a Lucca

Affetta da: Crigler Najjar di tipo 1

Situazione aggiornata: All inizio sembrava sana,ma dopo due mesi,in seguito ad una visita pediatrica e altri esami specialistici risultata colpita da questa malattia ereditaria.
Così è cominciato il calvario trà i vari ospedali.A marzo 2006 ci siamo recati a Bruxelles in Belgio e abbiamo tentato un trapianto sperimentale di cellule epatociti.Dopo due mesi c è stato il rigetto.L unica cura era dormire nuda sotto una lampada speciale a luce blù in grado di ridurre l effetto della malattia.
Dopo un anno di attesa il 06-04-2007 l istituto ISMETT di Palermo ha tentato il trapianto di fegato e fortunatamente è riuscito.
Fino ad oggi ho fatto e continuo a fare numerosi controlli a Palermo e sembra che io possa diventare una bambina come tutte.Questi viaggi sono costosi e la famiglia ha bisogno di essere sostenuta economicamente.

Note sulla malattia: È affetta da una grave e rara malattia denominata la sindrome di Crigler Najjar che si caratterizza esteriormente per il fatto che le persone affette hanno la pelle e gli occhi gialli (ittero). Un fenomeno dovuto all accumulo di bilirubina,un pigmento prodotto dall organismo che prodotto in eccesso può avere degli effetti tossici per il sistema nervoso centrale fino a danneggiare i neuroni e causare la morte.
Per tanto chi soffre di questa malattia,deve sottoporsi quotidianamente a foto terapia, che sfrutta l’effetto della luce di lampade speciali,8-10 ore al giorno riducendo così la qualità della vita o sottoporsi a trapianto di fegato.

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