(Adnkronos) - “I bisogni delle persone con idrosadenite suppurativa sono tanti e gravi. Solo unendo le forze la loro vita può cambiare”. A raccontare difficoltà e bisogni di chi è colpito da Hs, una malattia che si manifesta con cisti, ascessi e fistole, è Giusy Pintori, paziente, caregiver e presidente dell’associazione Passion People. La testimonianza è stata raccolta nel corso di un evento organizzato da Novartis in occasione della giornata mondiale dell’idrosadenite suppurativa che si celebra il 6 giugno di ogni anno.
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00:00The World Hydroxadenite Day 2024 is a very important moment that we have been waiting for all year.
00:13The issues to be addressed are serious, they are huge, and I say that it is necessary to make a team, all together.
00:22Scientific community, patient associations, institutions, media, everyone with their own skills, everyone with their own skills.
00:36We are available to talk about our entire experience, to tell everything.
00:43In my opinion, all together we can do it.
00:46Because when this happens, people's lives change, and we are here because health care is needed for people.
00:55There are many issues that patients face.
01:00From a physical point of view, the pain is certainly very intense.
01:06The compromise of movements, and sometimes the compromise of the functionality of the parts exposed to the disease.
01:17In addition to this purely physical aspect, there is a great interest from a psychological point of view.
01:27There are many assistive needs, because everything has to be done.
01:31We need to create, in my opinion, a network of safe reference centers, that is, structured,
01:40that have innovative tools, both from a diagnostic and therapeutic point of view.