(ANSA) – ROME, APRIL 19 – Living with a diagnosis of a rare disease represents a real obstacle course. But, when you are a woman, the difficulties increase, both as a sick person and as a caregiver. According to a survey carried out by the EngageMinds Hub of the Catholic University of Milan, led by Professor Guendalina Graffigna, perception of one’s own image, management of the disease, access to treatment, fertility, reconciliation of the role of worker with that of caregiver represent the areas of greatest difficulty. To shed light on the impact of rare diseases on the female population, “Women in rare” was born, a project by Alexion dedicated to the centrality of women in the universe of rare diseases.
A path aimed at exploring the impact of this specific condition on the different spheres of women’s lives, which will be articulated through the organization of institutional awareness events, a social media campaign to raise awareness of rare diseases and the drafting of a “book bianco”, in collaboration with EngageMinds Hub, Uniamo (Italian Federation of Rare Diseases), Fondazione Onda, Altems and the scientific committee of the “Women in Rare” project. The project was presented today at a press conference in Milan. “The presence of a rare disease has a strong impact both on the life of those affected and on that of caregivers – explains Professor Graffigna – However, several studies underline that it is greater in women, who often have to face unique and specific challenges related to their health condition.
For those with rare medical conditions, for example, body image can become a source of concern and depression due to the physical effects their condition can have. Rare diseases also have a significant impact on the management of the daily life of women who are affected by them”. On the other hand, that of those who care for a family member with a rare disease, “the change – adds Annalisa Scopinaro, president of Uniamo – it must pass through structural interventions that guarantee the right to choose.
This means facilitations for part time and smart working accompanied by home assistance that can also allow for a career choice”. (ANSA).
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