(Adnkronos) - "Mi sono iscritta al corso proprio perchè sono già caregiver di un bimbo con malattia rara. Essendo io madre, so bene che anche la famiglia ha bisogno di aiuto. Ai genitori dico di non finire nello sconforto: è una realtà difficile la nostra, però esistono persone competenti. Bisogna affidarsi agli altri”. Così Maria Carmela Curatola, discente del corso di formazione per assistenti familiari di persone con sclerosi laterale amiotrofica (Sla) e altre patologie neurologiche complesse alla cerimonia della consegna dei diplomi del corso organizzato da Regione Calabria e Aisla, Associazione italiana sclerosi laterale amiotrofica, di Reggio Calabria.
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00:00Can you tell us about your experience during this training course?
00:10Yes, I signed up for the course as soon as I was aware of it,
00:14precisely because I am a jackal giver of a child with rare disease,
00:18a rather serious and serious disease,
00:20and I wanted to learn more about what can be the management of the disease,
00:27in particular about SLAI.
00:29In fact, I did not know SLAI, I have to say the truth.
00:31I learned a lot, it helps me a lot to manage my son better,
00:35but I hope to be useful also in the management of some other patient,
00:39of some other relative, and also of the family itself,
00:42because, being a mother, I know well that the family itself needs help.
00:47What is the message you want to send to parents who, in short,
00:51face a certain delicate situation like yours?
00:56Don't go, don't end up in discomfort,
00:59because our reality is a bit difficult, it's true,
01:04we can't hide behind a finger,
01:06but there are people who are competent,
01:10you have to find them, but there are competent people,
01:13and you also have to trust others, without resentment, without prejudice.
01:18Let's trust others and let them help us,
01:21otherwise others cannot force us.