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October 2, 2017 | by  | in Features |
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Get Adrenaline or Die Tryin’: The Truth About Anaphylaxis

Anaphylaxis is like one of those remorseless slowpokes holding up foot traffic along Lambton Quay; no matter how hard you try to avoid them, they will always strike at the most inconvenient of times.

One such occasion that anaphylaxis decided to pay me a visit began like any other. It was a weekday evening. I reheated leftovers, which had the potential to vaguely resemble a meal, touching various surfaces in the kitchen as I went. Ten minutes later, as I sat down to eat with flatmates, I was met with signs of a mild to moderate allergic reaction. Hives covered my skin, my throat and eyes beginning to itch and swell. For a girl who has experienced chronic eczema, the itch was up there on the mild to “I’m going to gouge my eyes out” scale. I took some antihistamine tablets and thought nothing of it; there were certainly no allergens in my meal, so I thought it impossible for a severe reaction to befall me. To my dismay, the mirror begged to differ: it reflected an unrecognisable version of myself, my right eye having swollen to the size of a golf ball, causing tears to stream down my face. Still, I thought nothing of it. Minutes later, as I walked across my bedroom, unsteadiness set in, smothering me with an overwhelming sense of fatigue. My vision deteriorated and consciousness turned into darkness. Nothingness.

It wasn’t until a few hours later that I would realise I had passed out from low blood pressure, having gone into anaphylactic shock — a severe allergic reaction that can close the airways and force organs to shut down. Eating or even just touching egg, any nut product, or sesame, can be life-threatening. These foods are basically like pure poison to my body, sending my immune system into overdrive in an effort to contain the threat. And trust me, if you’re finding it hard to believe that food can kill you, there is no one that struggles to understand this fact more than allergic people themselves.

I must have come into contact with a substance I am anaphylactic to, though we still do not know what it was. I was completely ignorant to the extent of my illness, as many New Zealanders are. No matter how many times I lost consciousness, was hospitalised or even sent to Resus, I still failed to accept the reality of my illness. Concerned I would scare my flatmates with the swelling that disfigured my face, I had shut myself off from the rest of the world. Without knowing the location of my Epipen, it was pure chance that my flatmate had the initiative to locate the medication and administer it in time. The Epipen is a life-saving injection containing adrenaline, or epinephrine, that works to speed up one’s blood pressure and heart rate, ultimately necessary to re-oxygenate the blood. It sounds dramatic, but the reality is that if he had not done so, I would not be here today. Others, such as Emily White, a 15-year old Christchurch student whose life was taken by anaphylaxis just a few months ago, have not been as lucky.

Ignorance costs lives. What is most damaging, however, is the fact that this ignorance is not even surprising, given the unsupportive environment New Zealand has fostered. Death by anaphylaxis is absolutely preventable. And yet, if you don’t have the pecuniary means to access the required medication, or if it is not there in the first place, prevention becomes unfeasible. Currently, our government does not even partially fund Epipens. This means that a life-saving medication can cost anywhere between $120–$200 annually (yes, annually, because auto-injectors expire every 12 months and this does not include use before expiration). A life-saving medication that can stop auto-immune attacks in their early stages is not believed to be vital enough to fund. For the average Kiwi, especially students, this cost means many of us go through life without this medication, hoping the hospital will be close enough if something were to happen. However, funding is bound to save costs long-term in preventing hospital visitations. The government’s lack of support, both financial and educational, for people living with allergic disease ultimately sends the message to vulnerable New Zealanders and their families that anaphylaxis is not taken seriously. It is a system that does not value the lives of anaphylactic individuals as it should, partially attributable to the classic “she’ll be right” or “harden up” Kiwi culture.

One thing that frustrates me is the accusation of parents of “cotton wooling” their children. Despite various near-death experiences and restrictive diets laid out by medical professionals, New Zealanders often seem to suggest that parents unnecessarily “shelter” their kids from certain foods, thereby somehow causing severe food allergies. People fail to understand the genetic component to the illness, or to even see it as an illness at all, given its primarily unseeable nature. My mother always (perhaps irresponsibly) encouraged me to try new things and delegitimise my illness, attempting to ensure that others did not treat me differently for it, that it did not hinder my quality of life. We didn’t even own an Epipen until, getting the shock of our lives, 17-year old me experienced a reaction so severe at a Wellington restaurant that I needed to be resuscitated when even the second dose of adrenaline still did not allow me to breathe. All I remember, as my body became a detailed map of hives and welts, is a ringing in my ears before losing consciousness. It was deafening.

After this incident, I have been even more meticulous in letting hospitality staff know of my allergies. Once, plucking up the courage to ask after the ingredients of a rice dish at a food outlet at the Kelburn campus, I was met with “Oh dear, are you one of those annoying vegans?” Confused and embarrassed, I reply informing him of my severe food allergies and desire to eat something other than fries for once. “Oh, even worse — of course the rice dish contains sesame!” he responded. After casually discussing this incident with my dietician, she informed me I should have complained to the Health and Disability Commissioner, something that had never crossed my mind in the face of routine jokes about my illness. Whether it was a classmate waving a peanut butter jar in my face or the fact that Wellington Hospital was my second home during my time at Joan Stevens Hall (before getting a VUWSA advocate to speak on my behalf), people always found creative ways to make light of a dark situation.

Now, don’t get me wrong, living with severe food allergies can, on the odd occasion, be advantageous. Like when you go out for dinner and you already know what you’re going to order before you get to the restaurant because it’s the only safe option on the menu and you’ve had it ten times before. Or when you are supermarket shopping and you don’t have to waste time debating about brands in your head because there are only a select few that are not plagued with legal disclaimers regarding allergens. Or when it’s hard to put on weight because all of the cabinet food at the café, stocked with delicious cakes, is off limits, meaning you can only stare in awe at its beauty. Or when, at that same café, you know you will save more money than your friends because all of the available lunch options contain allergens — a common situation is when staff tell you they cannot make a meal without cross-contamination. Or, you are relieved to hear them tell you this, because the thought of putting your life in another person’s hands is too anxiety-provoking, and you would rather go hungry than risk another hospital visit this month. My immunologist tells me I simply cannot eat out or participate in certain everyday activities, but what sort of life is that? Why unnecessarily restrict those who need not be unnecessarily restricted? Eating out is such an important social activity and, if other countries can create inclusive environments for allergy sufferers, why can’t we?

What I’m saying is that food allergies and their common consequence, anaphylaxis, are severely misunderstood in New Zealand. So no, it’s not funny for you to wave your peanut butter jar in my face and pretend a life-threatening situation would be laughable. No, it’s not funny to interpret being allergic to nuts as a reference to your ball sack. And no, it’s definitely not okay for our society to sit by and watch another innocent person die from an absolutely preventable death.  

 

This article is dedicated to Emily White, and all New Zealanders whose lives have been tragically cut short by anaphylaxis, in an effort to raise awareness of the severity of autoimmune diseases.

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If you have ever had any difficult encounters with food allergies or anaphylaxis at VUW, we would love to hear from you. Please phone 04 463 6766, or email editor@salient.org.nz.

If you are living in a Hall of Residence and would like support from VUWSA’s advocacy service, please phone 04 463 6984 or email advocate@vuwsa.org.nz.

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