THEand rare diseases mainly concern women, which are 52.4% of the affected people. But that’s not enough. In Italy they are more than 2 million female figures who have to do daily with a rare disease: More than 1 million as patients and as many as a caregiver of a family membervery often a son or daughter. 70% of these pathologies in fact arise in pediatric age, with 19 thousand new cases every year. On the occasion of the World Day of Rare Diseases, experts explain how much more there is to do and why the support of the institutions is important.
Rare diseases: the White Paper is born
To shed light on daily difficulties found by women in assistance, in themselves or a relative And to answer you effectively, in 2023 it was born Women in rare– The centrality of women in rare diseases. The project is conceived and promoted by Alexion, Astrazeneca rare dysase together with Unitewith the participation of Onda Foundation ETS, Engageminds Hub And Altems of the Catholic University. It makes use of the valuable contribution of a scientific committee made up of experts of different specializations in the health of women and rare diseases. To create greater awareness of the topic, the first time in Italy the White Paper Women and Rare Diseases: Impact on Life and expectations for the futurecontaining information, qualitative investigations and testimonies of patients and caregivers.
The impact on the economic and working situation
To analyze the impact of rare diseases on the lives of patients and caregiver it was made a sample survey through the administration of questionnaires. “For 42% of women suffering from rare disease who participated in the investigation, The economic situation has changed following the diagnosis of rare diseasewith a worsening in 8 out of 10 cases and a consequent psychological impact In most cases. It was also given that, due to the rare disease, they respond to them I lose on average 45.46 days of work per year, corresponding to 3.78 days a month. As for the caregiver65% of the respondents reported that the diagnosis of rare disease of their child led to a change of the economic-financial situation. In 8 out of 10 cases it was a worsening, with psychological consequences (78%). For them, on average, There are 43.67 per year, 3.64 per month“, explains Giuseppe Arbiadirector of Altems.
Caregiver: the importance of a law
“The realization of the white photographer and the investigation that is at the origin has allowed us to collect significant data on the life of the women involved in a rare disease, such as patients or caregivers. In Europe diseases are considered rare when they affect 1 person out of 2 thousand And this makes it clear how those who suffer from it can feel alone. Nevertheless, theUN, with its resolution three years ago, has strongly recalled the urgency of promoting and protecting the rights of these people. To do this, it is essential to know their problems and their needs thoroughly and, in this regard, we realized that there were no precise data on the impact of rare pathologies on the life of women. Today, thanks to Women in rare we have these data and subject them to the attention of public opinion and institutions “, he underlines Annalisa ScopinaroPresident of the WE MEADE ITALIAN FEDERATION RARE DISEASES.
Why women
“The goal is to solicit actions that caregiver women can protect in their daily care activities. This often leads them to leave their jobs, and patients with rare disease about precision medicine and the prevention of other pathologies. It is necessary to help the first with a specific law that takes care of caregiving. The latter offering assistance and advice, continues Scopinaro. “Unfortunately, very often The female figures are considered the most suitable to deal with a sick family member. They are affected by pressure linked to the role of care, which leads them to renounce many of the social activities they did before the diagnosis, including work and hobbies “, highlights Guendalina GraffignaOrdinary professor of Consumption and Health Psychology at the Catholic University of the Sacred Heart of Cremona and director of the Research Center Engageminds Hub who took care of the investigation.
Rare diseases: the psychological impact
«The results confirmed the impact of rare pathologies on women’s lives. Most of the women interviewed told us that The pathology has a negative influence also on the perception of oneself and its femininity. They often feel embarrassed because of the physical limitations it involves. The same takes place for fertility, a delicate theme for many of them. With this campaign We want to turn on the spotlight on the condition of these women. Also request interventions from the institutions that are mainly on the offer of psychological support, on the creation of specific guidelines and diagnostic paths and on an implementation of territorial health services carefully with the gender issue “, concludes Nicoletta OrthmannMedical-scientific director of the Ets Foundation.
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