Salute, terapie e cultura trasformano la vita dei pazienti con emofilia

adnkronos

(Adnkronos) - Sobi ha organizzato, all'interno della sua sede a Milano, l'incontro "Sobi Let’s Talk. Mont Blanc experience: to the next level" che ha l’obiettivo di approfondire argomenti di attualità e prospettive inesplorate in un contesto, per alcuni aspetti ancora poco conosciuto, come quello delle malattie rare. Al centro del dibattito l'emofilia, una patologia rara della coagulazione, di origine genetica, che provoca emorragie, anche gravi, e microsanguinamenti a livello articolare. Questi eventi possono avere conseguenze significative sulla mobilità e sullo stato di salute complessivo dei pazienti. In Italia, secondo l'ultimo Rapporto Istisan dell'Istituto Superiore di Sanità, sono oltre 5.000.

Transcript

00:00In Milan, at the headquarters of Sobi Italia, the Sobi-Let's Talk-Montblanc-Experience-To-The-Next-Level meeting was held.

00:12The fourth meeting of the Let's Talk project, born in October last year,

00:16with the aim of deepening topics of current affairs and unexplored perspectives

00:20in a context, for some aspects still little known, like that of rare diseases.

00:25The meeting was dedicated to hemophilia, a rare pathology of coagulation, of genetic origin,

00:31which causes hemorrhages, also serious, and microblood at the articular level.

00:36In Sobi we always try to make the difference,

00:39so listening to those who are still unsatisfied needs of people who live with a rare pathology,

00:45those who are also called unmet needs, with the aim of improving their quality of life.

00:51Today the joints of hemophilic patients are more protected,

00:55thanks to a correct prophylaxis, to a monitoring of these joints,

01:00and also to therapies that are more and more effective,

01:04as important is also a continuous, accurate and correct information,

01:09not only for people with hemophilia, but also for their families and their caregivers.

01:15Sobi, in collaboration with Save One Life Foundation,

01:18has recently supported a group of people with hemophilia,

01:21in an exciting and extraordinary adventure, towards the top of Mount Blanc.

01:34We took part in this project related to Mount Blanc,

01:37to which we started working after being contacted about a year and a half ago

01:41by Save One Life Foundation, a global organization

01:45that supports patients with hemophilia in the world.

01:48And the reason for us to take part in this project is quite important,

01:51especially that we wanted to get behind it,

01:54so it's really an opportunity really to inspire the community,

01:57and that this shift from this idea with the media is,

02:01you have to produce a change of thought,

02:04so you've got to take risks, you've got to engage in activities,

02:09and what the reality is for patients today with the treatment that's available,

02:14An unforgettable experience that has remained in the heart of those who participated.

02:18It was a beautiful experience, also because I've never climbed,

02:23and so from nothing to start, to get over 4,000 meters,

02:28is a goal that can be achieved with a therapy,

02:37a training, and to know your limits, not to go beyond them.

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