Life-threatening allergies: our run, their lives

Hi, we are Julie & Pieter-Jan and Tamara & Phil.

What has brought our families together? We both have children with severe food allergies. We met through Luxembourg Allergy Network (LAN), a non-profit organisation that aims to support those whose lives are affected by allergies. They work towards better awareness of this life-threatening disease and promoting inclusion and education in Luxembourg.

We are running the ING team marathon on the 11th May 2024 to raise awareness about life-threatening allergies and to raise money for LAN. It will help LAN to continue working on their different activities to strive for a better and safer environment; creating better awareness and educational materials and offering increased support for families living with severe allergies (eg. through family events and support group meetings).

Julie & PJ's story

It all started when Elena was barely 2 years old. After merely tasting a little hazelnut paste, her lips began to swell, and we were utterly clueless about what was happening. The fear of the unknown gripped us at that moment, little did we know how fortunate we were that her reaction hadn’t been worse this very first time.

Until that point, Elena had never eaten nuts and of course we continued strictly avoiding nuts after that first reaction. We were still hopeful though, that this was a rare event and that the real extent of her allergies was not as severe as indicated by the blood and skin tests. But with further exams and provocation tests also came the reality check—anaphylaxis. It’s a terrifying word, and in that critical moment, we luckily found ourselves at the hospital, where every second counted.

The irony struck hard: something as seemingly “innocent and healthy” as food could pose a life-threatening risk to our child. Anaphylactic allergies are not mere intolerances or dietary preferences; they are a disease—one that demands vigilance and understanding.

We understood from the start that the likelihood of ‘outgrowing’ her allergies was small. And actually we are confronted with the opposite. In the meantime Elena seems to become increasingly allergic and has to strictly avoid all tree nuts, sesame and pine nuts (the latter not being a nut but a grain in spite of its name).

The severity of her allergies highly impacts her life. Rule number one is of course to avoid any reaction by avoiding the allergens. But while we do manage well at home, it gets tricky when we go out - friends, family, a restaurant - it remains hard to explain the risk, especially of cross-contact due to kitchen appliances still carrying the allergen for example. The lifeline for anaphylaxis lies in the adrenaline injection. We carry an emergency kit everywhere, knowing that preparedness can save Elena’s life.

But it’s more than just survival; it’s about awareness. Our beautiful little girl has already learned to advocate for herself. People often compare her condition to an intolerance or preference, but they don’t grasp the extent of the disease or what she misses out on. Our family lives in perpetual high alert, ensuring no accident happens or cross-contact slips through.

We remain hopeful - but also frustrated that there is no cure, and no way to stop the further development of allergies. We do grasp the only option we have now, oral immunotherapy (OIT). A very demanding process for Elena, imposing a limitation on physical activities during at least 2 hours a day. But she is motivated, even if this means she misses out on extracurricular activities. OIT will never cure her, but we hope to increase her tolerance levels and thereby limit the risk of a severe accident.

Next time you encounter someone with food allergies, remember that behind that seemingly ordinary person lies a hidden battle. It could be Elena, our little girl, or countless others facing an invisible foe.

So let’s be vigilant. Let’s educate ourselves. Let’s extend compassion. Because every label read, every dish modified, every conversation started—it matters. Did you for example know that the ambulances do not always carry adrenaline injectors? Did you know that research into these life-threatening allergies is still very inconclusive? We want to make a change and this is one of the main reasons we joined the wonderful team of the Luxembourg Allergy Network (LAN). We are convinced that, together, we can create a safer world for people with life-threatening allergies.

Elena (8 years old)

Hallo, ich bin Elena und ich habe schwere Allergien.

Ich fühle mich oft ein wenig einsam, weil ich meine Emotionen nicht zeigen möchte. Deshalb tue ich einfach so, als ob ich keine Emotionen habe.

Ich muss oft ins Krankenhaus gehen und Tests machen lassen. Wenn ich dorthin gehe, habe ich große Angst, weil ich keine Lust auf eine allergische Reaktion habe.

Ich muss auf bestimmte Aktivitäten verzichten und kann nicht spontan irgendwohin zum Spielen gehen, ohne mein Notfallset. Und ich muss jeden Tag zu lange ruhig bleiben wegen meiner Therapie - das ist manchmal wirklich schwer, besonders wenn ich meine Brüder und Freunde draußen spielen sehe.

Gott sei Dank habe ich eine Menge wundervoller Freunde, die mich einbeziehen lassen, auch wenn ich ihre Geburtstagskuchen oder eigentlich jedes Essen, das nicht sorgfältig vorbereitet oder auf meine Allergien überprüft wurde, nie kosten kann.

Und sie treten für mich ein, wenn manche Kinder gemein werden. Ein Junge hatte eine Nuss in der Hand, und ich sagte: “Leg die Nuss weg, ich bin allergisch gegen Nüsse.” Aber er hielt die Nuss einfach vor meine Nase. Zum Glück war meine Freundin dabei und sagte: “Sonst würde ich mit dir Taekwondo machen!” Dann hat er die Nuss weggelegt.

Tamara & Phil's story (told by Tamara)



It was just before Oliver's second birthday when we were visiting friends and I let him have a bite of a cashew nut cake. Immediately his eyes started swelling up, his nose was running and he cried. I did not know what to do, I had no medication on me. Fortunately we had enough time to drive to our pediatrician before the symptoms worsened: coughing, vomiting - all signs of a severe allergic reaction. The doctor administered adrenaline and we were taken to hospital by ambulance.

This is the moment when our lives changed. After thorough testing he was diagnosed with severe food allergies (anaphylaxis - the most severe form of an allergic reaction) to all tree nuts and peanuts. We hadn't known much about food allergies at all up until that point. We did not know anyone with food allergies.

From then on we didn't go anywhere without Oliver's emergency medication bag, we had to explain food allergies to our family and friends, we had to read every label on every food that we bought, we had to ask about ingredients at restaurants, often with a lack of understanding and giving us the feeling that we were being fussy. Later on we had to train the teachers at school on how to use his emergency medication. Before every playdate or birthday party that he was invited to we had to train the hosts and ask about the food. One of Oliver's biggest frustrations now is that he cannot spontaneously go and visit a friend. Everything has to be planned and arranged in advance.

Every step of the way we have been confronted with new challenges and more questions: how will we manage his allergies when he starts school as we handover the duty of care to someone else? Will he be exluded from celebrations? Will he be bullied? Will he feel different? Will he have a normal life?

A few years ago, we found out that his twin brother, Aiden, is also allergic to certain tree nuts. At this point we felt more in control and experienced in managing food allergies, but nevertheless felt frustrated on the impact this will have on Aiden's future.

We have been lucky to have had support and understanding from our family and friends. Also the support of Luxembourg Allergy Network has been invaluable, especially in the early days when it was so new to us. It was a relief to speak with others who understand, who share their experiences with us, give us advice and just to know that you are not alone. After having been on this journey for over 7 years now, I have become actively involved with LAN and am passionate about supporting others who are going through the same, sharing our experiences and advocating for better allergy awareness and a safer environment for those with food allergies.