2023-04-19 15:51:40
In a family where there is a member with a rare disease “in at least 30% of the cases one of the family members is forced to leave work, as emerged from a research we have done. Rare diseases often require care in the pediatric age (70 %) and the person who leaves the job is the woman. Data is needed to demonstrate how there are impacts not only on the family, but also on the GDP”. So Annalisa Scopinaro, president of Uniamo (Italian Federation of Rare Diseases), speaking this morning at the presentation event of Alexion’s ‘Women in rare’ project dedicated to the centrality of women in the universe of rare diseases.
“The paths of diagnosis, treatment and support for patients and their families – observes the president of Uniamo – largely depend on the Region in which they reside. This is why more than ever a greater connection on the territory is needed to change daily life of people with rare diseases through better socio-medical and home assistance. A change which – she adds – for the role of women, both as caregivers and as workers, 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. Initiatives such as ‘Women in rare’, with the contribution of associations that deal with rare diseases, go precisely in this direction”.
“The same law on caregivers – reflects Scopinaro – only considers a salary, social security aspect without leaving the right to choose. This work” carried out in the ‘Women in rare’ project, “will serve as support to the interministerial table for caregivers” which will will constitute, “to implement the draft of the law developed by the previous government”.
In the world of rare diseases, “associations – continues the president of Uniamo – are made up of women who, despite having left their jobs, nevertheless find the time to devote themselves to others because they know the importance of a network to deal with needs. I remember a mother who for 14 years practically stayed at home with her sick son, only going out to do the shopping a kilometer away. In the states of Northern Europe there is a tendency to pay more attention to families. In Denmark, for example, there is a system for taking care of children with disabilities with a voluntary network to give parents at least one week a year to go on holiday alone”.
Women and families need support. “We have a healthcare system that only provides care at home in very serious cases – underlines Scopinaro – We need a capillarity of assistance that starts from the home and the development of intermediate structures to leave one’s child in reliable hands for a few hours or days, in need”. Furthermore, “the psychological support at the diagnosis and subsequently is imprinted. It applies to moms, but also to dads and brothers – he reflects -. A rare disease has an impact on the whole family that is not taken care of”. Female caregivers, in particular, tend to neglect themselves. “I don’t know how many mothers I have seen die of cancer after their son’s diagnosis of a rare disease – she recalls -. They may have psychosomatized, but also avoided controls. If the woman is sick, an entire family and an entire system collapses. As an association we will start with a psychological support project – she announces – and we are thinking of ways to tell women to take care of themselves ”.
The impact is also in married life. Not only for the “complex problems related to fertility, given that the possibility of transmitting the disease by the woman is 50%. A rare disease can lead to a separation of couples – explains the president of Uniamo – but those who remain are more united and the male component tends to fight to ask for help. However, I note that most of the new families have less of the concept of a network, an association: they fight for an individual right”.
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