Eight-year-old Aisling Fitzgibbon suffers from a potentially fatal food allergy. For her parents it means non-stop vigilance which can be paradoxically more difficult in a society which thinks it knows all about allergies.
"The attention given to allergies in the last 10 years is a social phenomenon," says Aisling's father, Dr Joe Fitzgibbon. "The issue has been wrested from the medical people who should be dealing with it and this has very worrying consequences." He is the author of Could It Be An Allergy? published last week which gives a comprehensive guide to allergic symptoms for the lay person.
It is against this background of raised public awareness masquerading as public knowledge that the Irish Anaphylaxis Campaign held its first public seminar last Saturday in Dublin. Set up in 1995 to provide support for those at risk to potentially fatal food allergies, the campaign believes that through proper diagnosis, accurate information and the availability of emergency medication, deaths from anaphylaxis can be avoided.
Death from an allergy is from asphyxiation due to a swelling and closing of the throat, or from lung collapse as in a fatal asthma attack, or through a total shutdown of the system in which blood pressure drops, and the heart cannot effectively continue to pump blood round the body. This extreme allergic reaction is known as anaphylactic shock. The reaction occurs because the body's immune system over-reacts in response to the presence of a foreign body which it wrongly perceives as a threat. This causes it to release a chemical substance including histamine from cells in the blood and tissues. These chemicals act on blood vessels to cause the swellings and low blood pressure, and on the lungs to cause asthma.
Dr Bruce Mitchell, clinical immunologist at Blackrock Clinic, spoke at Saturday's seminar about the Irish experience of anaphylaxis. There have been three known deaths here in recent years, and probably a further unknown number which may have been misdiagnosed as asthma deaths. One known death was due to eating shellfish: "One of the unhelpful things to come out of general media publicity has been the focus on peanut," he says. "While people may suffer a strong reaction to peanuts, and to nuts in general, other foods are implicated such as rye bread, codfish, egg, wheat, milk, herbs, thyme, parsley. Certain drugs can cause a severe reaction as can strenuous exercise with or without the co-factor of an allergic food.
"About 5 per cent of the population are prone to an allergic reaction to food, that's about 200,000 people. The tiniest tip of the iceberg of these are at risk from an anaphylactic reaction. We must assess the risk and condition our response in this knowledge and context."
Not that he is complacent about the real fears and concerns of those caught at the sharp end. On the contrary, Dr Mitchell believes we need more attention given to proper, scientifically based research on the nature and profile of allergies. With laboratory colleagues he has recently completed two such studies.
In one, 33 people were selected on the basis of diagnosis where strenuous exercise induced an allergic reaction. The study showed that food played an important role in 28 of those cases. Wheat was the most common food trigger, followed by soya, peanut, apple, rice. "What you must do is not necessarily give up exercise, but avoid the identified food," he says.
In another, 10-year study, 220 patients who, on testing, showed the allergic antibody to peanut, were contacted with a detailed questionnaire. Of the 127 who responded, only 44 had actually suffered an allergic reaction when eating peanut.
"Two-thirds had no reaction to peanut even though they had the allergic capability," says Dr Mitchell, "something had changed. What may have changed was the body's capability to tolerance itself."
All these are difficult medical issues for the public to grasp. And yet because of public interest, allergies may be over-simplified in the media which, Bruce Mitchell feels, can be unhelpful.
"Damage is done when misinformation is spread; it can cause great anxiety, concern, phobias. The relative safety of the position is misrepresented and people can now feel they live with a time bomb. On the other side of the coin, those with anaphylactic capacity may not be aware of the significance of their condition and the potential hazards."
Accurate allergy testing, he says, involves the taking of a detailed clinical history by someone qualified to ask the pertinent questions and correctly interpret the answers, followed by an appropriate investigation which could include a skin test and/or a blood test. However, no universal blood test exists to test all allergies, and testing itself can prove fatal if there has already been a severe reaction to the allergen. Where there is this suspicion, testing should be done only where the necessary resuscitation facilities are available, which could mean a hospital, even an intensive care unit.
"Turning to the positive side, with accurate diagnoses and care and the availability of appropriate medication, people can live in relative safety," says Dr Mitchell. "The formation of self-help groups like the Anaphylactic Campaign is helpful. What we have to do is give our patients appropriate education, precise detailed information which puts things into perspective and helps them realise they can be masters of their own destiny."
Dr Paul Carson, a medical doctor with expertise in allergies, shared the platform with Bruce Mitchell on Saturday. "The popularisation of allergies has many implications for people at risk of anaphylactic death," he says. "First is the difficulty in getting accurate and informed information because we have too few doctors interested in, and formally trained in, allergy testing and advice.
"So you can have some people who are made unduly fearful, and others lulled into a sense of false security. For example, you have someone who is tested and shows up a bad reaction to aspirin. This is dismissed lightly, the implications are not explained, so that they later need an injection, receive one with aspirin derivative and suffer a severe reaction."
The appetite for allergies has, he says, given rise to a huge expansion in allergy testing services: "There are too many people out there offering bogus testing. Its falsity derives from the fact that the materials used are false and would not stand up to the slightest scrutiny.
"This is an issue for the public who need to recognise and accept that there is bogus allergy testing. I never fail to be amazed at the ignorance and gullibility of the public who would go down a boreen and into a dark room to have a pendulum swung over a child's head, and pay good money to hear what is said.
"I suppose they do it out of desperation, out of disillusionment with orthodox medicine, and also because they can't accept an orthodox diagnosis." Dr Carson accepts that there is also an onus on the medical profession to respond to public need: "There is in the UK and Ireland small respect still for allergy-based services and training. The funds are not there to develop proper hospital-based or easily accessible community-based services."
The Anaphylaxis Campaign can be contacted at PO Box 4373, Dublin 18. Tel 01-2952791.