Allergies are on the rise and so are potentially fatal anaphylactic attacks. Here's why a shot of adrenalin from you could make the difference between life and death.
Karen Chetner has experienced the horror of watching her sons suddenly gasp for air while in the grip of anaphylactic reactions. Felix, now 8, was two when his face and tongue swelled after he ate some beef. “He could only whisper,” Ms Chetner recalls, “And he was saying, ‘My tongue, my tongue!’”
Spencer, 7, was just one when Ms Chetner fed him a smidgen of hummus on a rice cracker. Within seconds, his face had ballooned until his eyes were almost forced closed. “He was coughing and gasping for air," she says. “He sounded like a seal when he was breathing because his airway was so constricted, and he was crying.” Spencer was allergic to sesame.
One in five Australians now suffer from allergies – which, at their most extreme, can kill. Indeed, one in every 200 Australians will experience a life-threatening allergic reaction called anaphylaxis.
But what is it exactly? Who is likely to get it? And how can you help?
It happens when someone’s immune system treats a typically harmless substance as toxic by making antibodies attack the allergen. “The body goes into overdrive thinking it needs to protect itself,” says Allergy and Anaphylaxis Australia chief executive Maria Said. This can trigger a range of reactions that escalate whenbreathing or the heart become compromised.
What are the symptoms?
Difficulty breathing – including a swollen tongue or throat – wheezing, persistent coughing, a hoarse voice or trouble speaking and circulation issues in the form of reduced blood pressure, dizziness or collapsing. Young children can become pale and floppy.
Anaphylaxis can sometimes develop from a mild reaction, which has more visible symptoms such as hives, redness and facial swelling. The reaction tends to hit within 20 minutes to two hours of exposure to the allergen.
Importantly, while vomiting is deemed a sign of a mild allergic reaction to food, these are symptoms of anaphylaxis in someone with an insect venom allergy.
What triggers it?
Allergies to some foods, insect venoms and medications. More than 170 foods are known to have caused severe allergic reactions but 90 per cent of food-related allergies come down to these 10:
- peanuts (which are actually legumes)
- tree nuts (almonds, Brazil nuts, cashews, macadamias, pecans, pistachios and so on)
- lupin (another legume)
It takes just a morsel of one of these foods to cause a life-threatening reaction but it’s mostly a myth that being near an allergen, smelling it or having it on your skin will cause a severe reaction, says Dr Lara Ford, chair of the Australasian Society of Clinical Immunology and Allergy's (ASCIA) Anaphylaxis Committee. A food protein must come into contact with a mucosal surface for someone to have anaphylaxis. In practice, this almost always means ingesting the food, she says, but someone can absorb an allergen by accidentally rubbing a piece of food in their eyes or nose, or by breathing in steam carrying certain food proteins – for example, standing over seafood while it is being cooked.
Bee, wasp and ant venom are the most common insect allergens. Ticks, caterpillars, March flies and bedbugs can also trigger anaphylaxis.
Some people can get it from anti-inflammatory medication such as aspirin and ibuprofen, and antibiotics including penicillin.
"It's most common when medication is given intravenously and, of course, that is a very serious and sudden anaphylaxis because it's in the blood stream," Ms Said says.
Who is affected?
As the graph below shows, hospital admissions tripled in the 10 years to 2016-17; in that year, a total 5698 patients were admitted. Two-thirds of the reactions were triggered by foods.
Most patients are young. In 2016-17, nearly a third were younger than 14 and nearly another third were aged between 15 and 29, says the Australian Institute of Health and Welfare.
Since an anaphylaxis register was set up on November 1 in Victoria, 1028 people have presented at hopsital emergency rooms – an average of 50 a week. Some 60 per cent were food related, 12 per cent were reactions to drugs and 13 per cent were caused by insect bites.
Teenagers and young adults face a higher threat of death from anaphylaxis because of their desire to fit in,says Associate Professor Richard Loh, a leading immunologist who co-chairs the National Allergy Strategy. “Teenagers don’t wish to be different from their peers, so they don’t carry their EpiPens with them … [and] when they go out to a restaurant they don’t want to do what their parents do and ask important questions about the menu, not understanding there is a risk of cross-contamination.”
Asthma sufferers are more prone to anaphylaxis when they are experiencing allergies because their lungs are hyperactive. Males are also more likely than females to have a food allergy, according to Professor Loh.
How many people die from an attack?
As you can see in the graph below, eight people died in 1997 and 27 died in 2017, two-thirds of them men. This rate of increase is about six times higher than the population's growth rate in that period. There were 389 deaths over the two decades – three-quarters of these in the past decade.
And these figures are believed to be understated, says Professor Loh. He says without a national register for anaphylaxis fatalities – which has been recommended by coroners in NSW, Victoria and Western Australia – it’s hard to know exactly how many people have died from the reaction.
But most people who have an attack make an excellent recovery, says Dr Ford. Only in rare cases can extended time with poor circulation lead to severe issues such as brain damage from oxygen loss. “Which is why intervening early is the most important thing ... doing everything you can to avoid factors that can exacerbate the reaction.”
Why is anaphylaxis on the rise?
Rates of allergic disease are growing, with more than four million Australians affected – food allergies alone affect one in 10 infants and one in 50 adults – but we don't know why. One hypothesis is that less exposure to infections in early childhood is linked to a higher risk of allergy. This has been supported by findings that younger siblings are less likely to have an allergy than first-borns, and that children who grow up around farm animals have lower allergy rates than city kids. “Unwittingly, our efforts to improve sanitation may have gone a bit overboard,” Dr Ford says.
Another potential explanation is that young children are being exposed to common allergenic foods later in life than they once were. In January, ASCIA published new guidelines in the Medical Journal of Australia calling for all infants, with guidance from their doctor, to be given eggs and peanuts in their first year of life – even if they are at high risk – to prevent the development of allergies to those foods. The new recommendations are based largely on findings from the five-year Learning Early About Peanut Allergy (LEAP) study in the UK.
Is anaphylaxis inherited?
The allergic disease underlying anaphylaxis can be inherited. A child has a 40 per cent risk of having allergic disease if one parent has allergies and 80 per cent if both parents have allergies, says Dr Ford. But she says it is only the tendency to be allergic that is inherited, not allergies to specific substances. In other words, just because your parent has a peanut allergy doesn't mean you’ll have one too – you could develop something entirely different, such as an allergy to bee stings.
Are there other signs?
One in every 12 people who has had anaphylaxis will have it again but Professor Loh says most patients who die from it have never had anaphylaxis before. “Of those who die, 80 per cent have mild to moderate reactions before the fatal reaction so, even if you have a mild reaction, I can’t reassure you that the next will be the same.”
Sixty per cent of allergies appear during the first year of life but they can develop at any time – shellfish allergies, for example, more commonly emerge in adults. Dr Ford says the reasons are poorly understood but a person is far less likely to develop an allergy to a food that is regularly in their diet. On the flipside, some children outgrow allergies. The Murdoch Children’s Research Institute found that almost two-thirds of children with a food allergy had outgrown it by age four.
What should you do if someone is having an anaphylactic reaction?
Four-fifths of adults would not recognise if someone was having a potentially fatal reaction, says Allergy and Anaphylaxis Australia, and more than two-thirds would have no idea how to help. The tricky part is that some symptoms of anaphylaxis, such as wheezing, could be attributed to many causes.
“You have to rely on surrounding circumstances and 'suddenness',” Dr Ford says. If someone with allergies rapidly develops any one of the symptoms of anaphylaxis – particularly after ingesting a known allergen or after having symptoms of a mild reaction – it's important to treat it as a severe allergic reaction first and foremost, rather than as a panic or asthma attack. “The uncertainty is the reason action plans say, if in doubt, give an adrenaline auto-injector,” Dr Ford says.
Once you determine someone is likely suffering anaphylaxis, there are two crucial things that must happen fast.
Firstly, the person must not be standing or walking – not even to an ambulance – because anaphylaxis causes blood vessels to dilate. “If they stand up, their blood pressure suddenly drops and this can be dangerous,” Ms Said says.
“The best option is to be lying down so the blood pools around their major organs rather than the legs.” So lay them flat, or if they are having trouble breathing in that position, allow them to sit.
Secondly, give them a shot of adrenalin in the outer mid-thigh with an EpiPen. If an asthma sufferer with known allergies is having sudden breathing issues, an EpiPen should always be given before a puffer. From about age 11, people with allergies are expected to always keep their EpiPen on them as part of their action plan. Younger children will usually have their EpiPen and action plan bundled together, for example in their classroom or backpack.
The EpiPen is the only type of adrenalin auto-injector available in Australia, and it costs about $40 for two under the Pharmaceutical Benefits Scheme. Extra injectors cost about $100 each. Adrenalin recalibrates a person’s blood circulation, strengthens their heartbeat and opens up the airways. “No other medication can reverse or treat anaphylaxis. It’s very safe, and it’s most effective when given early,” Dr Ford says.
She says an upright posture and delayed administration of adrenalin are the two key factors that lead to death. “It’s all about acting quickly.”
When it comes to anaphylaxis caused by an insect sting, the stinger should also be flicked out if you can see it. If a person is reacting to a tick bite, wait for medical professionals to remove it as there is a high risk of accidentally injecting more of the bug's saliva.
After using the EpiPen, call an ambulance. Then call the person’s family or emergency contact. You may administer more adrenalin if they don’t respond to the first shot after five minutes.
The patient will stay in hospital for at least four hours of observation, with the possibility of more adrenalin doses and CPR if they are unresponsive.
How do families live with the risk?
“Walking on eggshells” is how Ms Chetner describes it. “I feel like I can never turn off.”
Felix and Spencer are both allergic to egg; Felix is also allergic to dairy and peanuts and Spencer to sesame. Both had a longer list of food allergies, many of which they outgrew. “When they were diagnosed, I went through a grieving process … It wasn’t the life I thought was going to be able to offer the family,” Ms Chetner says. “My anxiety levels were so high.”
Letting go and handing control to others, such as school staff and parents, is extremely difficult, she says. “I always feel like I’m ‘that mum’, I have to advocate a lot for my kids,” she says. “I can’t just enrol them in something and say, ‘Have a good time’.”
Ms Chetner has hosted EpiPen parties to instruct parents on what to do when anaphylaxis strikes. “I want them to feel confident having my kids over for a play date.”
She spends her days in a never-ending cycle of preparing meals and snacks. At restaurants, she carries packed food for her boys. When they go to parties, she tries her best to replicate the treats that will be served so they don’t feel left out. The family can travel only domestically near hospitals and they bring an entire Esky filled with pre-made meals.
At school, she sets out a management plan for her sons with teachers every year. “There are a lot of awkward conversations … and so much planning,” she says. “It is absolutely life-changing.”
Her hope is for the broader community to not only understand those challenges but to equip themselves with knowledge on what to do should the worst happen.