To quickly say what anaphylaxis is: anaphylaxis is a rare but life-threatening allergic reaction. When referring to an allergic reaction what one means is that the immune system has mistaken something harmless, such as nuts or dust, as an intruder, something which shouldn't be there and releases histamine. The release of histamine causes a range of symptoms which affect different systems within the body. In patients with anaphylaxis the main systems which are affected are the respiratory, digestive and circulatory systems. This causes a wide range of symptoms from difficulty breathing to vomiting. What is an everyday treat, such as peanut butter, to the majority of people becomes something deadly to someone with anaphylaxis.
To go onto more about my experiences with anaphylaxis, I've suffered a wide range of them. I've suffered minor reactions where within minutes I became better and within hours could go back to everyday life however at the opposite end of the scale I've suffered reactions which have been deemed as deadly. I've been admitted to Intensive care on various occasions as well as High Dependency due to anaphylaxis. What many people don't realise or understand is that the issue isn't just coming into contact with something that causes an allergic response. Many times I've experienced an episode of anaphylaxis, been given prompt medical treatment and hours to days later have become extremely unwell again, fighting for my life. These are what are known as biphasic reactions. A biphasic reaction occurs when after the medication controlling the anaphylactic reaction wears off there is still some of the allergen left in the body and once again the body does everything within it's power to try and get rid of it. These reactions can often be worse than the initial reaction.
Anaphylaxis is an extremely frightening condition to live with. A common misconception associated with allergies is that they are easy to live with. "Just avoid the thing you're allergic to and you'll have nothing to worry about" when the reality is so much different. May contains, made in a factory with, produced on the equipment with are all part of the nightmare that is anaphylaxis. It's not just about avoiding the allergen itself but also a whole range of other things too. I remember going into a supermarket and picking up some flavoured water. I was reading the nutritional information when the allergy advice caught my eye "May contain traces of nuts". I put the water back down and sighed, totally frustrated. Allergies are hard enough to live with but many companies use what is known in the allergy community as "blanket labelling". This is where they will place allergy warnings, in particular nut allergy warnings, on everyday items that you wouldn't think would contain the allergen. Things like juice, crisps, even fresh fruit can often be off the tables when living with allergies because it's too much of a risk to take because even a small amount of the allergen protein can cause a life-threatening situation amongst allergy sufferers.
It's not even just food that proves to be an issue but other everyday items too. In particular living with a nut allergy is extremely challenging and difficult. I have several allergies to things but the hardest by far I've found is tree nuts and peanuts. You have to check the back of things like cosmetic products, cleaning products, medication because all of these have the potential to contain nuts or nut oil. It isn't an easy life to live but the reality is you've just got to get through it.
Many people ask me how I do it, how I get through things. The reality is that even though I've only been suffering with anaphylaxis and multiple allergies for just over 4 years, they've become such a massive part of my life that I cannot remember a life without worrying about food-labelling and may contains. I cannot remember back to when life seemed so much simpler and I didn't constantly have to stress about what I eat or have I got my medication with me. My allergies are a massive part of my life and to some extent I became my anaphylaxis and allergies for a while. Nowadays things are easier, I've learned what is safe and what isn't. Even then sometimes it isn't enough.
In the 4 years I've suffered with anaphylaxis I've suffered over 200 anaphylactic reactions including biphasic reactions. Every reaction has put me into the hospital whether it be the emergency department receiving observation, resusitation ending up with numerous needles and tests being performed or critical care (intensive care/high dependency) not sure what's going to happen next. Numerous people think I'm extremely careless when it comes to my allergies, that I evidently don't avoid the things I know I cannot have when this is far from the case. I avoid not only all the things that contain my allergies but may contains too. Unfortunately I suffer from a very rare issue compared to most people with anaphylaxis. My allergies constantly change. What I mean by that is quite literally I could be allergic to something one day and can eat it the next. What is safe for me today may put me in the hospital fighting for my life tomorrow. That may seem like a complete over-exaggeration but it's the reality of my life. The biggest example of this would be my anaphylaxis to nuts. My first reaction, in August 2010, was to hazelnuts and afterwards I suffered reactions to peanuts, almonds and many others. Late November 2011 I was accidentally given a meal containing nuts. I waited for the reaction to happen, I think those were the most horrible minutes and hours of my life to date, but no reaction came. On reporting this to my doctor I was referred back to a specialist for testing regarding this. I was blood tested, skin tested as well as given an oral challenge (this is where the patient is given the allergen in very small quantities and it's built up more and more to see if a reaction will happen). I passed all of them for both tree nuts and peanuts and was deemed non-allergic to both. My anaphylaxis no longer seemed as scary as it once was. I could eat things freely without having to worry too much. During April 2013 I was re-diagnosed with anaphylaxis to both peanuts and tree nuts after eating some cashews and going into anaphylactic shock. It felt like my world had crumbled. I felt completely back to square one and totally alone.
"Fussy eater" "It's just a peanut" "Don't be so over dramatic" "You're just attention seeking" these are all quotes from people I've come into contact with regarding my allergies. People don't seem to understand the implications of anaphylaxis. I think it's because it's not them or someone they are close to suffering from the condition. They don't understand how difficult life with allergic reactions truly is. A lot of people associate allergies with a slight rash or a sniffle, such as that of hayfever, many people are un-aware that for so many people over the world it's life-threatening. Looking at some statistics published by Allergy UK (http://www.allergyuk.org/allergy-statistics/allergy-statistics):
-Each year the number of those suffering from allergies increases by 5%, half of these being children
-Over 150 million people in Europe alone suffer from allergies deeming it the most chronic disease
-In 10 years time it is expected that 50% of Europeans will suffer from allergies
-In the UK there are 30 specialists in allergies. This means that there is 1 specialist per 700,000 patients suffering from allergies
-£68 million is spent annually for hospital admissions for allergies
Food allergy.org (http://www.foodallergy.org/document.doc?id=194) also published statistics relating to anaphylaxis in particular:
-In the US food allergies result in more than 300,000 ambulances being called out to children under the age of 18
-In the US every 6 minutes someone is admitted to an emergency department suffering with anaphylaxis
-Teenagers and young adults are most at risk for fatality associated with anaphylaxis
-Children suffering with food allergies are 2-4 times more likely to suffer with an associated condition, such as asthma or hayfever, than children without food allergies
So why isn't more awareness being raised regarding this condition? Why are there still so many common misconceptions associated with this condition?
The condition affects so many people worldwide, many children, yet still there is hardly any awareness regarding it. Allergies are NOT just something simple to live with, they are extremely difficult, they influence many factors of a person's life not just their eating. It impacts upon where they can go, their education, their work as well as them having what is considered to be a normal life.
Allergies can be severe and the reason behind writing this blog is to hopefully give somewhat of an insight into life with an allergic condition and hopefully raise more awareness regarding this nightmare.