Video: Living with food allergy

Video transcript

Kate - Allergy sufferer

How do you define a food allergy?

So a food allergy to me is a life-threatening condition I live with every day. It basically means that my food allergies can be so severe they can be life-threatening.

What foods are you allergic to?

I'm allergic to peanuts, nuts, and peas.

I was diagnosed at a really early age, so it was before I can remember. But I used to actually be allergic to egg and milk as well. And they are more likely to be outgrown in childhood. So my mom fed me some scrambled egg, I believe, when I was a toddler, and she thought I was just having an allergic reaction in a normal way. It wasn't really considered something that could kill you when I was, back in the 90s, so she fed me egg. She knew I was having a reaction, but she gave me an antihistamine and thought it would be okay. It was very clearly not okay. And it was just lucky that we had a doctor that lived next door who had adrenaline in her house and was able to save my life.

How have you managed your allergies?

It's definitely gone through different phases in terms of how I manage it. When I was little, it was really up to my parents to make sure that they looked after me. And I remember being drilled, do not share your food on the playground, do not trade food on the playground, do not eat anything that we haven't told you it's okay to eat. So it was very much a lot of stress for them to make sure that there was never any issue. The teacher on morning tea break had an EpiPen on them, which was kind of unheard of then. There wasn't really any policies in place.

But when we moved into high school, then it became much more self-sufficient, being responsible for making sure that I was making the right choices, doing things myself. And then today, managing it independently.

What is the worst reaction you have had?

So I was 18 years old, and I was at a multi-school function, it was one of those big days where everyone was gathered together. So maybe about 2000 people. And I'd made a decision that I was going to eat a chocolate chip cookie. Which I wouldn't have normally done, but I was feeling like it was okay, there wasn't nuts in it. And it took about five minutes before I started feeling really hot on my chest. And I was with people that didn't really know me particularly well. So I made a comment about it, I was like wow, I feel really hot on my chest. And they acknowledged it, yeah, you look quite red. But it wasn't until I saw a friend a few moments later and made the same comment, and I realised from the look on her face what was actually happening. And I looked down properly and saw that hives were bubbling basically all over my chest and down my arms.

So at that point I knew I only had a few moments to really make some quick decisions. Problem was, I was in a crowd of about 1000, 2000 kids all leaving for buses at the same time. So it was in a swarm of people. I managed to find my best friend, grabbed her, tried to explain what was happening. And it was in that moment that I actually had to lie down on the ground. I could no longer stand anymore. So I was able to talk her through injecting the EpiPen, even though she'd already practised, it was good that I was able to coach her through it as well. She administered it successfully, St. John's ambulance was already there because it was such a big event. So it was just a matter of waiting for the ambulance to come. But even after the EpiPen, I was lying on the ground. I was so exhausted I was unable to move.

What happens after you get to hospital?

So I was taken to hospital after the allergic reaction, and it's really important that you stay under surveillance, just to make sure that you don't relapse in any way, the issue doesn't start uprising again. But everything was all fine from that perspective. But it did lead to some really significant consequences I wasn't quite aware of before it happened. So the reaction actually resulted in me developing chronic fatigue for about six months. Which was very difficult, because I was in my HSC year. And I was unable to get up any morning and go to school on time. I had problems with attention, I couldn't remember anything. Which was really really strange from someone that was really dedicated and excited to finish their final year of high school to being unable to tell you what day of the week it was, or what time it was. It was very, very surreal.

What has happened since then?

Since then, I've had a few reactions. None as significant. But I haven't had a really bad reaction in a number of years, which is great. But I'm very diligent about what I eat and who I'm surrounded by in terms of managing my food allergies. If I'm not sure of a situation, I just don't take the risk anymore.

Do you have any messages about food allergy?

Food allergies are really serious, and can be life-threatening. So there's no joking around with them. Unfortunately, with pop culture there tends to be a bit little more light-heartedness about them sometimes. But it is a very severe condition. The problem is you don't know it until it's happening to you, and all of a sudden you've got 10 minutes to decide whether you live or die.

What do you think about food allergies in school?

I think it's really important that schools take food allergy really seriously. I went through a period of education where there was no policies in place, and it was always a bit of a risky experience for my parents, for myself. It was just kind of lucky that nothing happened to me in a significant way when I was growing up. And I think the changes they've made now are excellent. But there still needs to be more work done.

What changes have been put in place?

I think the policies that schools have put in place now are fantastic. Like no nut policies, making sure teachers are trained and educated about what to do in an emergency situation is absolutely essential. In some instances we're talking about five year old children that are not able to manage those kinds of emergency situations. So having someone around that's able to take action quickly is vital.

Is there a cure for food allergy?

There is no cure for food allergies, which can be really difficult because on one hand you can live a normal life, but in a flash it can all change and suddenly you find yourself in a life-threatening situation. I hope one day they'll find a cure, because it can be very debilitating from a social perspective, from simple decisions that people don't even think about, like what you eat for breakfast every day is something I think about every single day. And I will do for the rest of my life. So I hope one day they'll find a cure.

Do you carry an EpiPen?

So I carry my EpiPen with me all the time. It's right here in my bag. Looks like this, in a case. And this is an EpiPen. How to use an EpiPen. So you remove the blue cap first, and that activates it. Then you place the orange end at the thigh, you don't need to remove clothing, press really firmly, hold for 10 seconds, and then slowly pull away. The orange end will expand so you never have to see the needle. A really good way to remember how to administer an EpiPen is to remember blue to the sky, orange to the thigh.

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