Chi siamo, l’associazione onlus Vivere con C.H.I.

Vivere con C.H.I. è un’associazione nata da un gruppo di genitori di bambini affetti da iperinsulinismo congenito dell’infanzia.

C.H.I. ( Congenital Hyperinsulinism of Infancy) è l’acronimo internazionale che identifica questa patologia.

Mettendo insieme l’esigenza di unire diverse esperienze per poter essere di supporto alle famiglie che in futuro, loro malgrado, saranno costrette a rapportarsi con questa malattia genetica rara, abbiamo unito le forze in occasione della Conferenza Internazionale avente a tema proprio l’iperinsulinismo congenito dell’infanzia (C.H.I.) tenutasi a Milano a metà Settembre 2013.

Raccogliendo il suggerimento del sempre cortese Prof. Chiumello dell’Ospedale San Raffaele di Milano, abbiamo intrapreso questa iniziativa.

Con il passare del tempo abbiamo compreso che, insieme, ci si sente meno soli nell’affrontare un problema che, magari all’nizio può sembrare una «montagna insormontabile» , ma che, con la progressiva conoscenza della malattia, non solo può ( e deve!) essere affrontato ma, spesso, viene ricondotto ad una serie di accorgimenti che mettono i nostri bimbi in condizione di condurre una vita normale, magari con qualche abitudine alimentare non così diffusa e con periodiche visite e controlli, ma, pur sempre, normale!

Questo, a nostro giudizio, è il risultato a cui tutti dobbiamo ambire.

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