Mario, 46 anni…

“Salve a tutti, tra pochi mesi compirò 46 anni, sono sposato ed ho una bambina di 9 anni. Sono affetto da fibrosi cistica ad espressione clinica completa, presento due mutazioni F508del. La malattia mi è stata diagnosticata all’età di 4 anni a seguito di ripetute bronchiti e malassorbimento che determinava scarsa crescita. La notizia della malattia gettò nello sconforto i miei genitori per le tante incertezze che ancora avvolgevano questa malattia genetica.

Seguirono esami, ricoveri e tanta angoscia per un decorso che si prospettava incerto e per il notevole impegno terapeutico che si rendeva necessario.
Il tutto aggravato dalla consapevolezza che dalla fibrosi cistica non si poteva guarire. Anche allora si parlava di sopravvivenza media ma con termini ben diversi rispetto ad oggi.

I miei genitori possedevano una piccola casa in collina e questo mi consentiva di trascorrere lunghi periodi all’aria aperta a stretto contatto con la natura.

La tranquillità di quei luoghi e la libertà con cui potevo muovermi sono rimasti dei punti fermi per tutta la mia vita. Oggi alle soglie dei 46 anni posso dire che molti timori vissuti anche in maniera drammatica nel passato sono stati superati.

Certamente la fibrosi cistica ha condizionato molte mie decisioni ma, serenamente e sempre con l’aiuto dei miei genitori ho cercato di programmare la vita “convivendo” con la malattia. Di fondamentale importanza è sempre stato il rapporto con il Centro di cura FC che con le sue varie figure professionali è stato presente soprattutto nei momenti difficili. Insieme abbiamo condiviso gioie e preoccupazioni nonchè discusso sull’opportunità di alcune scelte che la vita inevitabilmente mi ha posto.

Oggi il rapporto con il personale del Centro FC è più che mai speciale, ricopre una parte fondamentale della mia esistenza e spesso lo coinvolgo per situazioni anche in contesti al di fuori della malattia.

In passato, subito dopo il conseguimento della laurea, sono stato impegnato in un gruppo di volontariato dove erano seguiti giovani con varie disabilità e l’esperienza maturata in quegli anni ha contribuito a modificare la percezione della “mia” fibrosi cistica.

I limiti imposti dalla malattia, talvolta, si sono rivelati un’ occasione di riflessione che, diversamente, non avrei saputo cogliere.

Anche il contesto lavorativo dove sono inserito rappresenta, senza dubbio, uno stimolo positivo ed un’ occasione di confronto e di collaborazione con altre persone.”

 

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