Sian-Louise Tarn, author of ‘Darling you’re a Daisy’, a book that counteracts negativity around neurodiversity, talks to us about her biggest fear.
What is your biggest fear? Spiders? The dark? How about your child dying because of something that is meant to keep them alive?
That is the fear for many allergy parents across the world.
I’d like to take a moment to define an allergy. An allergy is an immune system response. It’s different to an intolerance or a dietary choice. It is your body fighting an allergen as it would fight a cold, or the flu. Each allergic reaction a person experiences is likely worse than the last because their immune system is primed and ready to fight from the previous exposure.
It has been 8 years since my son received his initial allergy diagnosis and in those 8 years, approximately 80 individuals in the UK have died as a result of a food allergy. That’s 80 families that have been shattered by something which is supposed to keep you alive – food. Approximately 2 million people in the UK have food allergies but anyone can be allergic to anything and have a reaction anytime.
I will admit that in the last eight years, there has also been an increase in the level of understanding of allergies and what it means to be allergic – especially to the Top 14 allergens. The Natasha Allergy Research Foundation (www.narf.org.uk) especially has been a huge driving force. This amazing foundation stemmed from terrible tragedy and a shattered family. Auto adrenaline injectors (AAIs), commonly referred to as Epi Pens, (which is actually a brand name) have been proven to save lives.
But there is still room for improvement.
Because it doesn’t start with industry standards, it starts with education. Before my son’s diagnosis, I didn’t know anything about allergies. I assumed they were inconsequential, something you would always grow out of and maybe a slight inconvenience. But the diagnosis tilted my world viewpoint and I’d like to share that insight with you.
I know everyone’s experiences are going to be vastly different but for our family, living with my son’s allergies is checking every label three times. It’s shopping online because I have to check everything in case the recipe and ingredients has been “improved”. It’s wiping down surfaces and washing your hands every time you come home and especially before you eat. It’s not sitting next to a friend while they eat their lunch because even being that close could make them ill. It’s bringing your own food to buffets, birthday parties or shared areas. It’s a backpack with EpiPens, cetirizine and hand wash that goes with you every time you leave the house. It’s watching every person around you with food in case they get too close. It’s refusing food at a work lunch because it’s less than four hours before you have to pick up your son and the allergens wouldn’t have left your system and your child could still have an allergic reaction to you even if you shower and change your clothes before you pick them up….
It’s always there. Food could kill.
Often the hardest part of living with allergies is meeting new people and explaining to them. I used to be very aware of how other people might feel about it; primarily using kinder phrases like “could make him sick”. But semantics meant that people took it less seriously. Food could make him sick… or it could kill him. He might grow out of it but right now I’m not risking it. (For reference, please don’t ask someone who discloses that they have an allergen if they’ll grow out of it. They don’t know. No one knows and hope can be so fragile.)
As a family, we are actually quite thankful that our son was diagnosed with his allergies as a very young child. It means that it’s all he’s ever known; he doesn’t share food, he doesn’t put things in his mouth, he always washes his hands, he always carries his medication… It’s just how life is. Now that he’s getting older, he can advocate for himself too. We also feel ‘lucky’ that he does not have an airborne allergy – if someone opens food he’s allergic to near him, he won’t have a reaction from the particles in the air, but he will if he touches or eats it.
If you ever meet someone with allergies, please take the time to find out what their allergens are and if there’s anything you need to do to keep them extra safe. Food allergens are not just in food, they’re often in health and beauty products because it’s “safe”. It might not be for them. It could make them sick. Or it could kill them.
That fear is constant.
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This article was published February 2025