Lina’s story

How do you live with food allergies?

From the life-saving kit to the choice of places to eat out, the extraordinary normality of a girl with a severe multiple allergy. Where are we with the rights of allergy sufferers?

“I can never be without the life-saving kit on any trip.” Lina Scavi, 27, takes a spray inhaler, various cortisone and antihistamines, but above all, two adrenaline shots from her bag. A spare is essential in case the first one breaks or is defective. She is allergic to many foods, especially cereals and nuts. “I am at risk of anaphylactic shock,” she explains. We asked her to tell us what it’s like to live with a severe multiple allergy in 2023.

The debut

“Allergies and I were born together. The diagnosis,” she says, “came when I was only two months old, and I was allergic to 90% of foods. In the 1990s, my parents found themselves dealing with a child with serious problems who could eat almost nothing. At the time, it was still a taboo.” Martina is allergic to wheat, barley and spelt, walnuts and hazelnuts, but the list was much longer until a few years ago.

First times

For an allergy sufferer, the most important first times are when you taste something new, thanks to therapeutic paths. “At 11 I was able to try chocolate, at 13 eggs, at 20 corn and then spend an evening at the cinema munching on popcorn. It seems trivial, but for me, they were important milestones and beautiful sensations”. On her Instagram profile, she documents these steps forward. “What does happiness taste like? Maybe I still don’t know – he writes – but today, after 26 years, I discovered what pistachio ice cream tastes like. Something banal, I know, but not for me”. How can you miss something you’ve never tasted? “It’s being aware that maybe you’ll never know what it tastes like”, he replies.

Allergies and social life

Living with a serious allergy also means that danger can creep into the most beautiful moments, those of conviviality, in dinners with friends, at a birthday party, at an aperitif, or maybe on vacation, when you’re thousands of kilometres away from home, and you have no defences. “Certainly, today, an allergic person can live a better life than during my childhood and adolescence, but there is still a long way to go when it comes to rights. Despite many mandatory courses for restaurants and bars, it is still difficult to understand the difference between an allergy and an intolerance between wheat allergy and celiac disease. The right rules for non-contamination are often ignored”. You have to know how to organise yourself. “You can’t afford the luxury of being unprepared; above all, you must surround yourself with people who include you. What makes the difference is the friend who invites you to lunch at home knowing that he will have to have certain attention or who thinks of you in choosing the most suitable place to spend a carefree evening”.

Trusting labels?

Another sensitive issue is food labelling. “My relationship with labels is conflicting: I trust, and I don’t trust at the same time.” Lina rereads and examines the list of ingredients dozens of times, but often it’s not enough. A personal distraction or an error by the person who packaged the product can prove lethal. As the latest news shows, a wrong or omitted label can kill you. A twenty-year-old died in Milan last February from anaphylactic shock: she had eaten a “vegan” tiramisu with undeclared traces of milk. Every year, an average of 40 deaths are recorded from anaphylaxis due to insect bites and food allergens, according to Food Allergy APS, a figure that could be underestimated. For Lina, seeing herself in other people’s stories is inevitable. In the aftermath of another tragedy in 2018, he shared his thoughts on Facebook: “… the case of Cilli, a regular customer at the restaurant where she dined for the last time, shows us that nothing is predictable. That you can know your limits by heart and know how to cure them but that nothing will inevitably have the same happy ending”. An allergy sufferer lives with this sense of precariousness.

“A more inclusive world”

We don’t just need targeted interventions – the most urgent ones are related to facilitating access to life-saving drugs, training school staff and precise guidelines for restaurant managers. Lina insists on the importance of a more general change of perspective, of a cultural revolution rather than a political and bureaucratic one: “In my ideal world, an allergy sufferer can go to a restaurant with peace of mind without having to repeat things 20 times and call in the days before to make sure there is sensitivity on the issue and that their needs will be taken into account, without having to necessarily look for an apartment with a kitchenette when they go on holiday. In a truly inclusive world – she continues – the rights and well-being of allergic people also count”.

Rita – Mother of Christian, 13 years old

Hi, I’m Rita, and I’m the mother of Christian, a child who has had asthma since he was 3 years old.

The road to the diagnosis of severe asthma was long and full of unexpected events; at the beginning, they told us that Christian had bronchial asthma and that it would pass as he grew up; then came the diagnosis of allergy to cat hair and only later that of severe asthma.

Christian was never well. He couldn’t run, cry, or even laugh.

We spent his entire childhood between hospitals, doctor visits and treatments. I remember one of the many nights of attacks and air crises; my husband and I decided to spare Christian from yet another hospital stay and calm him down at home, we succeeded but the next day, the doctor told us that that choice was dictated solely by love, we put our son’s life at risk.

For me, severe asthma is Christian’s look of fear. If I had the certainty that for a whole day, my son would not have asthma attacks… that would be the best day of my life!