(Adnkronos) - “Da oggi il futuro esiste. È un grande giorno perché abbiamo finalmente il farmaco, per bambini e giovani adulti, che cambierà totalmente la vita dei pazienti” con ipofosfatasia. Sono le parole di Luisa Nico, presidente Api - Associazione pazienti Ipofosfatasia, partecipando, a Milano, all’incontro con la stampa per la rimborsabilità in Italia di asfotase alfa, prima terapia per la cura dell'Ipofosfatasia, organizzato da Alexion, AstraZeneca Rare Disease.
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00:00It is a very complex disease that also leads to great fatigue, very serious forms of insomnia,
00:12anxiety, depression.
00:13It is a form of pathology that isolates you from the social context because it is not what
00:21you expect from such a young person, a 30-40 year old person, a person who is full of
00:25work activity.
00:26So, in a way, it is different from the others, so very often you get confused with a person
00:33who complains.
00:34For the family that supports you, if you have a family around you, it is a very brave thing
00:41because all the hearts are in charge.
00:43Today is a day of great achievement because it means giving hope to the children, it means
00:49giving hope to the families that are in a way anxious for the future of their son, of
00:55their daughter.
00:56And so the possibilities of equality are recreated for the future and the sociality of these
01:03children.
01:04So we are very happy.
01:05The Association of Patients has the task of networking and above all of informing, helping
01:10the awareness of the families, let's say of the doctors, of society in general, but
01:16also simply in the parishes, it is not enough, and then of course to have on our part the
01:23possibility of directing a reference also for the families to know where to go, so
01:29what path to take instead of making the journey of hope and throwing away a lot of money because
01:34you can't understand what you have, both for the families and for the patients themselves.
01:39We have a particular and dedicated day, which is October 30th, and it is precisely our day
01:45of the bee, so we as the Association of Patients, post-photasy, we try to be just like the bees,
01:52so working bees, to be able to go slowly to pollinate, to cultivate, to spread, and
01:59we are really happy to be able to do this network, that is, the patient and the families
02:04should not feel alone, and all together makes the difference.