Recognising the danger of anaphylaxis
Much more serious than today’s ubiquitous ‘allergy’, the condition is extremely debilitating and can be life-threatening
In July 2016, 15-year-old Natasha Ednan-Laperouse boarded a flight at London Heathrow airport after eating a sandwich she had just bought in Pret a Manger.
Anaphylactic to sesame, the teenager assumed the baguette was safe to eat as there was nothing listed in the ingredients which would have posed a danger to her life – however, sesame was baked into the bread and she went into cardiac arrest and tragically died after the flight landed in France and she was rushed to hospital.
A few weeks ago, the food company offered its condolences and regret while agreeing to change its labelling policy to ensure all produce shows exact ingredients. This was too little too late for Natasha’s family, who have been left utterly devastated by their loss.
And as the parent of someone with anaphylaxis, I also live in fear of this fate striking my own family. My eldest son was confirmed anaphylactic to tree nuts when he was seven. It was a bolt out of the blue and we were initially paralysed with shock as the thought of how we would protect him from something as innocent as food throughout his life was overwhelming.
We were told to adopt the policy of “no EpiPen, no food” and try to carry on as normal, but as Natasha’s grieving parents know only too well, sometimes the jab of a pen is too late to save a life – which is why it is absolutely crucial that all ingredients are listed so people can see what they are buying and are not, as the teenager’s parents felt, playing Russian roulette with their child’s life.
As well as this, many experts believe the growing number of people who claim to have allergies is diluting the seriousness of conditions such as anaphylaxis, which only 1-2 per cent of people have.
These days, every class has a child who is allergic to some food stuff, every dinner party contains at least one guest who can’t eat gluten, dairy, nuts or something else – but more often than not, the most problematic reaction these people will experience is nausea, a rash and some discomfort.
Allergy expert Dr Paul Carson believes that because so many people are “allergic” nowadays, the distinction between feeling unwell and having a life-threatening condition has been blurred and the public has no idea how dangerous anaphylaxis actually is and don’t realise it can kill – in a very short space of time.
“I do believe the abuse of the word allergy reduces the impact of serious allergy issues like anaphylaxis, which is an aggressive, life-threatening, total body allergic crisis where the sufferer has multiple organ involvement including circulation collapse, swelling throughout breathing tract obstructing airway, skin swelling and the emotional sense of impending doom,” he says.
“Causes of a true allergy are not totally clear but there are a lot of people who say they are allergic to foods and really are not – it’s become a bit faddish.”
Dr Carson, who runs Slievemore Clinic in Dublin, also says too many people are being given EpiPens or equivalent unnecessarily. “I feel that adrenaline pens are being prescribed without a proper and firm diagnosis – often for medico-legal reasons – as in doctors covering their own backs,” he says.
This is very bad news for people who are anaphylactic (particularly as there is currently a world shortage of adrenaline pens) and Dr Carson advises sufferers to be extra vigilant in the management of their condition.
“If a foodstuff doesn’t have ingredients listed, don’t risk eating it,” he advises. “The onset of anaphylaxis varies from an immediate reaction [within seconds] and even up to one or two hours later depending on the severity of the allergy, how much of the allergen was consumed and other factors such as exercise or alcohol consumption.
“Then even if the auto-injector (EpiPen) has been used, the patient must get proper medical attention ASAP. This is based on ‘second wave’ anaphylaxis attacks in those who are exquisitely allergic [mainly children with eczema, allergic rhinitis and asthma] and may need more than one injection or need more intense supportive measures such as IV fluids.”
There is perhaps good news on the horizon for those at risk of violent reactions to peanuts. According to results published in the New England Journal of Medicine in November 2018, more than two-thirds of children on a trial for a new immunotherapy drug can now safely eat peanuts. The drug, AR101, desensitises people with a peanut allergy, with Irish children involved in the two-year trial.
Die within minutes
People with anaphylaxis, like my son and tragic Natasha, can die within minutes of ingesting an allergen and this is the message which needs to be got across – particularly as a trawl through the comments section on articles on the topic always contains an alarming number of taunts from people who genuinely believe the condition is just an attempt at attention-seeking. They fail to see how their lives should be disrupted (by not eating nuts on a plane for example) just to satisfy someone else’s little quirks.
This makes an already debilitating condition even harder to manage.
Anne Walsh was so worried about the lack of information about anaphylaxis that she set up allergylifestyle.com in a bid to make people aware and also to provide much-needed advice and supports.
“I felt there was very little support and practical information available regarding life-threatening allergies,” she says. “I found it difficult to get products to store pens correctly (adrenaline has to be kept at room temperature) or to alert others to the fact that my daughter has serious allergies. So in 2013 I took a career change to bring together all the products you would need if diagnosed with anaphylaxis, asthma or allergies and to share practical information with parents.”
Her 14-year-old daughter is anaphylactic to peanuts and after witnessing her experiencing a severe reaction, Walsh, who used to work as a biomedical scientist, has also campaigned to ensure all the restaurants in her hometown of Castlebar keep a stock of life-saving EpiPens on-site in case of emergency.
“These restaurants can now hold adrenaline auto-injectors on site under the new legislation and could respond to a serious allergic reaction until medical assistance is obtained,” says Walsh.
“It makes an enormous difference to a family event to know you can eat out safely and we feel the allergy community will appreciate and support restaurants investing in staff training.”
Anne Walsh with her daughter Aisling, who is anaphylactic to peanuts.