Graffigna (Cattolica), ‘there is a lack of data on the psychosocial impact of rare diseases in women’

2023-04-19 15:51:27

In the context of rare diseases “there is a lack of literature on the psychosocial specificities of women: we found 150 papers, and of these, just 12 focused on the topics of our interest: only 3% of what has been published in the last 10 years is on psychosocial and anthropological aspects This was stated by Guendalina Graffigna, professor of consumer psychology and health at the Catholic University of the Sacred Heart of Piacenza and director of the EngageMinds Hub research centre, speaking this morning in Milan at the event for the launch of the ‘Women in rare’ by Alexion dedicated to the centrality of women in the universe of rare diseases.

“Women are not only carriers of a rare disease, but 70% are the caregivers of a pediatric patient”, recalled the professor, presenting the ‘Progetto Donna’ survey which she coordinated for the Women in Rare project. The work, carried out by the EngageMinds Hub of the Catholic University of Milan, highlights that the perception of one’s own image, disease management, access to treatment, fertility, belonging to cultural minorities and the reconciliation of the role of worker with that of caregivers represent the areas of greatest difficulty in the management of rare pathologies for women.

“For women suffering from rare pathologies – recalls Graffigna – body image can become a source of concern and depression due to the physical effects that their conditions can cause. Not only that, the lack of awareness of rare diseases and the lack of knowledge can lead women to experience social stigma and to feel judged and discriminated against. Rare diseases also have a significant impact on the management of the daily life of women who are affected by them. Not knowing when and which symptoms will appear – continues the expert – does not allow you to organize your day, make plans and, more generally, manage daily and family commitments. In fact, they report that they always feel tired, not being able to do the shopping, take care of the house”.

Another aspect concerns fertility. “ Various analyzes – Graffigna points out – underline the difficulties in processing the feelings linked to infertility associated with many rare diseases. This can contribute to feelings of anxiety, depression and isolation. Finally, another aspect that emerged from the research concerns belonging to a cultural minority. This characteristic constitutes a further complexity to be taken into account because, in addition to the inequities linked to gender, the management of the rare pathology can be compromised by vulnerabilities linked to cultural stereotypes, language barriers and different conceptions of health”.

There are also cultural issues to consider. “Often women don’t legitimize themselves to ask for help from friends, openings, associations – underlines the professor – The woman has internalized models for which she feels guilty in declaring that she needs help. They are women who, if they can’t do tightrope, blame themselves “. To change the situation “there is a very simple tool to use – reflects Graffigna – to give a voice to women, to accept that it is normal to have the desire to have health, psychological, social needs, leave the child for a few hours, have a space for itself. This project wants to raise a finger to help public opinion, in the workplace, to be able to legitimize these differences, transform the support networks”.

Something is changing. “A fact that struck us is that of the 150 initial literature papers with attention to gender in rare diseases, 30% were from the USA, but immediately after was Italy with 10-15% – concludes Graffigna -. A reflection on rare diseases is being carried out, they are reflections more related to diagnostics and the impact of therapy, there is one more step to be taken for the psychological and work aspects. After the publications, we hope there will be some specific projects ” .