Epilepsy is a problem that affects over 3 million family members of people affected by the disease throughout Italy: they are mainly women

ROME – Today is there International Family Day: established in 1993 byUnited Nations General Assemblyis celebrated every year to raise awareness of the social, economic and demographic processes affecting families around the world. The LICE, Italian League Against Epilepsyon the occasion of this day, draws attention to all the people (parents, siblings and relatives) who take care of a person who is suffering every day, recalling that the family represents the most precious, often irreplaceable support for those who suffer of Epilepsy.

The numbers that frame the situation. In Italy there are more than 3 million people who take care of family members who are not self-sufficient or with chronic disabling pathologies. In 9.4% of cases they are women between 18 and 64 years and 5.9% of men in the same age group, the share is higher among individuals aged 45-64 (12.2%). About 650,000 people simultaneously take care of both children under the age of 15 and other sick or disabled family members aged 15 and over, or the elderly: 1.9% of women aged 18-64 and 3% of the population in the 35-54 age group (Source Istat 2018).

The great role of the family. “The family has a fundamental role in the care and maintenance of a child or family member with Epilepsy” – highlights Laura Tassi, president LICE and neurologist at the Niguarda Surgery for Epilepsy and Parkinson’s (Milan). “Although in most cases the patient has the possibility of leading a normal life, the social context in which he lives and confronts himself is often wrapped up in prejudices about the disease and it is complex and counterproductive to reveal one’s disease to others. Without underestimating then, the impact that a high level of care can have on those called upon to take care of those affected by the disease every day, and the resulting stress, negatively affecting their health and quality of life”.

A complicated balance. “Ours is a life in balance – say Gabriella and Silvio, parents of Clara, 14 years old – with great uncertainty about the future and unpredictability in the present. Sometimes we feel alone in difficulties and responsibilities. Clara, with medium cognitive delay and drug-resistant epilepsy, can never be left alone, not even in the bathroom, above all because crises are almost always associated with a potentially very dangerous fall. Every day we face the ignorance around us about what Epilepsy is, while we try to make our daughter live as normal a life as possible in her condition, respecting her needs, guaranteeing her the time dedicated to studying and socializing with her classmates and peers”.

The absence of a dedicated national law. And if the people who take care of non self-sufficient family members are central figures in the life of epileptic people, despite the many regional initiatives, there is still no national law in Italy that recognizes this role; to date, this is one of the areas in which it is most urgent to intervene at the legislative level, to protect all those people who, at least in half of the cases, have had to leave their job to devote themselves to full-time care. “In a family – adds Oriano Mecarelli, Past President LICE – women and mothers are often the most involved in treatment and it is they who must be supported, even psychologically. People who have the role of care learn the art in the field, often amidst difficulties, bureaucratic complexities, with levels of physical and psychological stress not to be overlooked, for this reason it is important that this role is recognized at a legislative level and that the activity of care has much more protection and benefits than those already existing in our country”.

One of the most common neurological diseases. With over 50 million people affected worldwide, epilepsy is one of the most common neurological diseases, which is whyWorld Health Organization recognized Epilepsy as a social disease. It is estimated that in industrialized countries it affects about 1 in 100 people: in Italy about 600,000 people suffer from Epilepsy, as many as 6 million in Europe. In high-income countries, the incidence of epilepsy has two peaks, respectively in the first year of life and after the age of 75: in Italy it is estimated that 86 new cases of epilepsy occur every year in the first year of life, 20- 30 in youth/adulthood and 180 after the age of 75.