(Adnkronos) - “Patologie come la colite ulcerosa hanno un forte impatto emotivo in quanto il paziente tende ad isolarsi non solo dal proprio contesto familiare, ma anche dal contesto lavorativo e scolastico”. Così Salvo Leone, direttore generale dell’Associazione Amici Italia e chairman di European federation of Crohn's & ulcerative colitis associations (Efcca), in occasione della conferenza stampa organizzata da Lilly dedicata ai bisogni dei pazienti e alle nuove prospettive di cura in seguito all’approvazione, da parte di Aifa, di mirikizumab, primo di nuova classe di farmaci contro la malattia.
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00:00What is the meaning of the word chronic?
00:04The word chronic means that those who are affected by this pathology
00:07will have to live with it for the rest of their lives.
00:10These are diseases characterized by a non-visible disability,
00:13with very difficult symptoms to tell,
00:16with phases of activity and non-activity.
00:18So, if I had to describe it with one word, I would say
00:21it's like going on a trip with an unpleasant companion hoping that he will always sleep.
00:25These are pathologies that have an emotional impact
00:28because clearly the patient tends to isolate himself
00:31not only from his own family context
00:33but also from the more external context that surrounds him.
00:36So I am referring to the work environment
00:39but also to the school environment,
00:41especially for the younger patients.
00:43The Media Conversation Guide is actually a tool for journalists.
00:47Journalists, for us, represent professionals
00:51who are the link between those who have this disease and those who don't.
00:55A link between those who have this disease
00:58and those who must guarantee them protection and rights.
01:02So it explains to journalists not how to tell the disease
01:05because they know how to do it very well,
01:07and this is their job.
01:09In fact, we wanted a tool that would allow them to tell the disease
01:13trying to focus on aspects that were very important for the patient.
01:19So we were looking for a tool that would provide journalists
01:24with an element to tell the disease from the point of view of the patient.
01:28We hope to have succeeded in this work.
01:32From our point of view, it is a project that has given us a lot of satisfaction.
01:36The disease is democratic.
01:38It affects everyone, both young and old, and those who are younger.
01:42From the point of view of work, we conducted an investigation in 2023
01:46on a sample of 1,350 patients.
01:4973% of them were in the working age,
01:53and they told us that 6 out of 10 patients
01:57had to take a break from work due to the disease,
02:01and 20% had reported phenomena of discrimination in the work environment.
02:06Clearly, the stigma is often not the result of a lack of solidarity,
02:10it is the fact of not knowing what is the discomfort that causes these diseases,
02:14especially if the patient does not talk about it.
02:16So these are pathologies that have a significant impact.
02:19Above all, they make us say that these are family pathologies,
02:22not because they are transmissible, contagious,
02:25or because they are transmissible between blood relatives,
02:28but simply because if there is a family nucleus of four people
02:31in which there is a patient, especially if the patient is the breadwinner,
02:35it means that there are four people who suffer the discomfort of having this disease.