2023-06-19 15:26:00
From patient ‘activation’ to patient ‘integration’: women with gynecological tumors have become inspirers, co-authors and protagonists of the narrative and digital and offline information path of the ‘Keep us informed!’ project, which promoted on 16 and 17 June a great live event, the first national meeting behind closed doors completely dedicated to patients with gynecological cancer, involving 80 women who came from all over Italy to tell their stories and exchange information and experiences.
“Gynecological cancers. Let’s stay informed! da donna a donna” is the awareness campaign, now in its fourth edition, conceived and created by Pro Format Comunicazione and Mad Owl in collaboration with aBRCAdabra, Acto, Loto, Mai più sole, and sponsored exclusively by Gsk. This year’s campaign – reads a note – in addition to ovarian cancer, was extended to the other four types of gynecological cancers: endometrium, vagina, cervix and vulva with the aim of bringing out the needs of patients in a perspective of survival and chronicity, provide information on all gynecological tumors and encourage exchange and comparison between patients. The event was punctuated by scientific sessions, round tables, workshops and spaces for direct discussion between patients, distributed over the two days.
‘Fundamental concepts emerged from the meeting – says Silvia Gregory, contact person and member of the Steering Committee of Acto Italia – being actors of one’s own disease, being responsible, choosing one’s own path of treatment and making sure that therapy revolves around life , and not the life around the disease. Another very important thing is being able to meet a doctor who knows how to accompany you along a path of treatment, which fortunately, thanks to all the progress that has been made, in most cases can last many years”.
“Many women, due to the discovery of a tumor at an early age, have had to undergo therapy and operations, giving up forever the possibility of becoming a parent – says Maria Grilli, general secretary of aBRCAdabra – This event was an opportunity to underline that if the patients, after such a tough diagnosis, didn’t break it is above all thanks to them, who understood the wonderful world of things to discover that there is beyond the wall of the disease. Despite this, let us remember that when the reproductive organs are affected, women must manage not only the fear of the disease, but also the consequences on self-esteem and the inevitable repercussions on the sexual sphere and on the balance of couple life. However, on the scale of priorities, the desire to survive and take control of one’s life remains”.
The initiative “gave many women the opportunity to discuss many topics concerning the treatment process – underlines Manuela Bignami, director of Loto – In particular, we collaborated on a working table from which a concept emerged that is very close to the heart: that of lived health. We cannot speak only of time free from illness. Patients must bear in mind that life must be lived and therefore health must be lived in a conscious manner and with one’s possibilities”.
“We reiterated how essential it is for women to be adequately informed before diagnosis, that general practitioners are informed – concludes Valentina Ligas, secretary of Mai più Sole – ‘Gynecological tumours. Let’s keep ourselves informed’ is an information campaign that is also important for achieving the goal of reaching healthy women, not to scare us, but to explain that there is a pathology such as cancer which, on so many occasions, can be prevented and treated, and from which it can be healed”. During the work, a call was launched for the collection of patients’ stories, who until 17 September will be able to send their contributions on some key aspects of the treatment process to the campaign website www.manteriamociinformate.it: psychological well-being, relationship with partner, quality of life, fertility and family life. The story that a jury of experts deems most suitable will become a graphic novel, entrusted to the pencil of the illustrator Gaetano Di Mambro.
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