Siobhan Wilson · 42 min
At 16, Siobhan Wilson has survived 130 resuscitations, seven anaphylaxis episodes, and nearly died in an ambulance on the night she won Young Entrepreneur of the Year, and she's turned every moment of it into a mission to make Australia safer.
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Siobhan Wilson was born at 27 weeks, weighing 843 grams. She spent her early life in the NICU, resuscitated roughly 130 times, and faced open heart surgery at one month old. Her single mother refused to let those medical conditions define her. When Siobhan complained about yet another doctor's appointment, her mum said simply: suck it up, princess, you're not the only one. That no-nonsense support, paired with bedtime stories about fairies and magic, became the soil where Siobhan's creativity grew. At six years old, sitting in the back of a car on the way to another appointment, she sketched out a business plan to help other kids with medical needs and disabilities. By ten, she had registered her company, Our Pixie Friends.
In October 2024, Siobhan won Young Entrepreneur of the Year at a local awards dinner. She had checked the restaurant six times to confirm her food was safe. She had anaphylaxis, which she had experienced seven times before. But that night, the dairy-free mashed potato was made on machinery shared with butter and milk products, and the manufacturer was not required by Australian law to disclose it. For an hour after the awards ceremony, Siobhan mistook her symptoms for anxiety and asthma. By the time the ambulance arrived, she needed the equivalent of 12 EpiPens to keep her alive. The paramedics told her they didn't think she would survive the 15-minute drive to hospital.
Now 16, Siobhan trains as a sports and event medic because she wanted to be the calm, reassuring presence for others that she did not have that night. She works on food labeling laws, medication transparency, and community awareness of anaphylaxis. To people living with this condition, she has one message: don't be humiliated by what happened. To their carers, she offers gratitude and a reminder: we need space and time to heal, and your patience is what we need.
“I calculated how many times I almost died and I think it was about 130 times in the niku where they had to restart my heart.”
“I had an equivalent of 12 epipens before I could breathe. The ambulance was running out of adrenaline and they were begging the local hospital to take me.”
“I heard them on the phone saying, 'I don't think she's going to make it the extra 15 minutes to the hospital.' And the other one's like, 'Yeah, yeah, I'm like right here. Hello.'”
The hero, today
Siobhan's mother taught her not to let medical conditions define her identity, telling her to 'suck it up, princess' while still supporting her fully, which shaped how Siobhan approaches her own adversity. Every anaphylaxis episode is different, and waiting or trying to manage symptoms without an EpiPen can be fatal within minutes, so using the pen immediately is not embarrassment, it is survival. Food labeling laws in Australia allow manufacturers to sell products made on shared machinery with major allergens without disclosing it if they can clean the equipment, which means people with severe allergies cannot trust the safety information they're given. Siobhan did not use her EpiPen for an hour during her anaphylaxis reaction because she mistook life-threatening symptoms for anxiety and asthma, proving that even someone with seven prior episodes can miss the signs. Siobhan trained as a sports and event medic specifically to be the calm, reassuring presence for others in medical crisis that she did not have when the ambulance told her she might not survive the 15-minute drive to hospital. People with anaphylaxis need physical touch and connection, but the risk of cross-contamination has made simple human contact like hugs and handshakes a source of anxiety that carers need patience and time to work through.
Yes. Siobhan Wilson is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
Siobhan's mother taught her not to let medical conditions define her identity, telling her to 'suck it up, princess' while still supporting her fully, which shaped how Siobhan approaches her own adversity.
Every anaphylaxis episode is different, and waiting or trying to manage symptoms without an EpiPen can be fatal within minutes, so using the pen immediately is not embarrassment, it is survival.
Food labeling laws in Australia allow manufacturers to sell products made on shared machinery with major allergens without disclosing it if they can clean the equipment, which means people with severe allergies cannot trust the safety information they're given.
Mon & Mazz (Host) · 00:03
Welcome to the Grit Diaries with Mon and Maz, a place where we share real stories meets real transformation. Each episode, we share the journeys of everyday people who's faced life's hardest moments and found their way to hope, healing, and purpose. May their courage inspire you and in the world around you. Let's get inspired. Here we are at the Grit Diaries with Mon and Maz. Today we have the pleasure of interviewing the incredible Siobhan Wilson, 16-year-old advocate for education around anaphylaxis. This is what I took away from our interview, Mon, is moving your pain into purpose. And, you know, for someone that was just— had a challenging start to life, how she's, you know, at the ripe old age of 6— can you believe it?— started her first business. Yeah, business plan and all. Incredible, you know. And for any of you that are feeling life's handed you some really rough cards, you really want to tune in and listen to this. She's an absolute dynamite, but very passionate about educating community and listening. I think too, just knowing the stats, 20 people a year in Australia die of anaphylaxis and more than 12,000 admissions into hospitals. So it's an area that all Australians should understand and be aware of. And she gives some really good information about really understanding anaphylaxis and supporting people with that challenge. Hello everyone, welcome to another episode of The Grit Diaries. Good morning, Mon.
Siobhan Wilson (Guest) · 01:43
Good morning, Mez.
Mon & Mazz (Host) · 01:45
So lovely to see you once again, and aren't I excited about today? Oh my gosh, we are so blessed to have so many incredible guests on our show, and there is absolutely no exception today. We have the incredible youngest guest that we have ever had on The Grit Diaries, and a big welcome to you, Siobhan Wilson.
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Siobhan did not use her EpiPen for an hour during her anaphylaxis reaction because she mistook life-threatening symptoms for anxiety and asthma, proving that even someone with seven prior episodes can miss the signs.
This conversation includes born at 27 weeks, 843 grams, her mum said suck it up, princess, magic in the waiting rooms, a six-year-old with a business plan, the awards dinner and she didn't know it was anaphylaxis.
Siobhan Wilson (Guest) · 02:05
Hello everyone, it's so great to be here. Thank you so much for having me.
Mon & Mazz (Host) · 02:09
We're recording this really early in the morning. Siobhan is up and ready to roll at 6:30 in the morning, so that is intense dedication. So we're really humbled by your dedication and commitment to being here, and we really look forward to sharing your story today.
Siobhan Wilson (Guest) · 02:24
Thank you.
Mon & Mazz (Host) · 02:25
Just a little bit of a background about Siobhan and where Siobhan began and what's really got her changing her pain into purpose is Siobhan began began her life a lot earlier than most. Beautiful young girl who is now 16. She was born at 27 weeks, not even a kilo at birth, about 820—
Siobhan Wilson (Guest) · 02:46
843.
Mon & Mazz (Host) · 02:48
Clearly a little fighting spirit. And as some of you would know, that when you are born that preemie and that low weight, it comes with a bit of a bag full of health challenges that Siobhan has had to face in her lifetime. Many would be understandably feeling like they're behind the eight ball and just trying to get on in life. This young lady, Siobhan, has changed that situation to really helping others through her journey and has formed an organization, Our Pixie Friends. So that's just a very brief introduction. Mon, how excited are you to hear from Siobhan today? Well, I congratulate you, Siobhan. You were preemie, but you're certainly very early in everything you do, and to get onto a podcast and talk about your story of grit to grace is fabulous, and that sense of self-awareness. I really can't wait to hear your story, and for the listeners, hopefully they'll take some little gold nuggets out of it. Siobhan, is there anything that you want us to add? Is there anything that you want to add at the beginning before we get going and just sort of start diving into your story?
Siobhan Wilson (Guest) · 03:49
Yeah, I think I'd like to share that my mum was a single mum, so she helped me along my journey herself. It's been an incredible childhood despite all the medical challenges, despite the trauma that I had. And she inspired me to have courage and to not be like down in the dumps about my medical conditions, to the point where I was in the car on the way to yet another doctor appointment and I was whinging about, "Why do I have to go to the hospital? I don't want to go for this test." And she goes, "Oh, suck it up, princess. You're not the only one." So she was really supportive in that way, not let my differences stop me from seeing that there was a fault in myself, if that makes sense.
Mon & Mazz (Host) · 04:28
Rockstar mum. You know, I think that's an excellent lead-in to what a profound impact that the people around you, most importantly your parents, whatever shape that takes. So shout out to your mother. Shout out to her. I would imagine, as you're a nurse, you would see different parents and styles in hospitals, and you obviously align. I just know your spirit, that you align with that kind of approach, isn't it? The positive but get on with it. Just a beautiful approach.
Siobhan Wilson (Guest) · 04:56
Resilient.
Mon & Mazz (Host) · 04:57
And, you know, I heard something the other day, Siobhan and Mon, and it was a group of school students being asked, what do you feel when you hear the word resilience? And one student piped up and said, well, normally it's a word that is associated with a positive connotation, but being resilient, while you're trying to be resilient, is anything but feeling like positive because you have to go through the hard yakka to get there. My definition of resilience is capacity to cope, but that's not always easy. Yeah, beautiful. All right, well, with that, Siobhan, let's dive in to just sort of discovering more about you, your backstory, what life was like growing up for you. And I think before we started, you know, I know Mom was curious if you have siblings, and, you know, starting out in life as we've sort of started to talk about, and what your experience was like growing up before we lead into, you know, the main crux of, you know, what you wanted to really deep dive into today around your challenge.
Siobhan Wilson (Guest) · 05:58
Yeah, sure. So Despite the medical challenges that I faced throughout my early childhood, my mum managed to let me see the magic and good in the world. So she would like always read to me all the fairy stories, Shirley Barber, Forget-Me-Not Fairies and all this sort of stuff. So I believed in magic all the way. I was helped and supported throughout my medical journey. So that was a really big thing for me. And I have like so many siblings, but they're all half siblings, so it gets a bit complicated on that side. But I have a brother who's in Victoria, a sister who's in Victoria, sister who's up here, and a brother in Victoria. I'm terrible with geography, but I think I've got 3 in Victoria.
Mon & Mazz (Host) · 06:41
For those of you that are listening around the world, that is down south. You're up in Brisbane, and Mon and I are smack in the middle of all of you in Sydney area. And where do you come in the family line, Siobhan?
Siobhan Wilson (Guest) · 06:53
I'm the youngest. Um, so the eldest sibling is 39, I believe. So there's quite a big age gap there, but it's been great because I older siblings to kind of look after me, and they buy me stuff. So I just love being able to look up to them and see what they're doing in their lives. You know, one of them's a midwife, one of them's a nurse, I think one of them's a landscaper, and the other one, leader and manager at a sporting precinct.
Mon & Mazz (Host) · 07:19
Wow, quite diverse.
Siobhan Wilson (Guest) · 07:20
Yeah, yeah.
Mon & Mazz (Host) · 07:23
And so when you started out in your young little tiny little life, you had a series of you know, you needed to be resuscitated many times over. What do you feel has been those challenges for you health-wise in those early years? Because that's no mean feat just to even survive those experiences, and no doubt was, you know, extremely traumatic for your mum. What has been the challenges for you as a result of being born preemie?
Siobhan Wilson (Guest) · 07:51
Yeah, being born premature has had a lot of downfalls. I was being resuscitated 3 or 4 times a day, and so I had open heart surgery when I was 1 month old. So I calculated how many times I almost died, and I think it was about 130 times in the NICU where they had to restart my heart. So that was really insane. So that must have been really scary for my mum. Growing up, I had a lot of other challenges because in the NICU you have something called premature lung disease sometimes, your lungs aren't fully developed. And so I was on breathing tubes and things like that, I believe. I don't remember. Going back there. But I've been, like, I have asthma now as a result of that. I have allergies, but I'm not sure if that's a result of that either. So there are a few things that run in my family and a few things that are because I'm premature. So I kind of just link them all together as a bulk medical condition. Another thing is I have non-verbal learning disorder. So it doesn't mean I'm non-verbal, but it means I struggle with all the non-verbal cues and I don't have a map in my head, so I get really lost easily. And I also can't estimate distances. But I just got the medical clearance to drive, so I have to get an OT assessment and everything. So hopefully I'll be able to drive at some point. But yeah, it's been a challenge and they think I might have neurodivergence because of almost dying, the resuscitation part all the time. They're not sure. A lot of it is because you're preemie kind of thing, because that's sort of the best way to describe why I have the medical conditions. I have multiple other medical conditions, but yeah. Fecal bladder dysfunction is another thing, so growing up was really hard with the nappies and stuff at nighttime. So I'd go to sleepovers and parties and camps, and I'd get teased a lot for wearing nappies. So I was really lucky to have some friends that were not teasing me about it. I wanted to be normal throughout my childhood. I wanted that normality of childhood, wanted the innocence of childhood, but because I had all the medical conditions, I was as innocent as possible, but I had all the trauma from it, if that makes sense.
Mon & Mazz (Host) · 09:52
Absolutely makes sense. And, you know, you talked about at the beginning there, really appreciate you unpacking that. You know, for all of us that have been, for whatever reason, gifted with a body that kind of came out the gate, you know, relatively intact, when you hear how things were for you getting going, you know, we can only sort of really extend gratitude for you sharing what you're sharing, but also for all of us to be reminded of, just to be grateful for what we do have and to use it to the best of our ability. I'm curious, you were talking about how magic in your early childhood was something that was sustaining as you were going to various appointments, just believing in life, I guess. What was it? The stories, the books, your mum's influence to, you know, really inspire you to be inspired by magic. What was that for you at those times?
Siobhan Wilson (Guest) · 10:45
I think magic was an escape for me. So during all the medical procedures, I believed that there would be fairies around me, or, you know, when I had all like the laughing gas and everything for like pain and everything, I would see trolls playing soccer with the fairies, you know. So it gave me a sense of hope from my own understanding, and I think that's why I ended up starting my social enterprise, Apixie Runnings, because I wanted to provide an escape for kids with medical needs and disabilities, for them to not feel so alone. So when I was 6, after whining to my mum and going, "Why am I the only one?" and her saying, "Suck it up, princess, you're not the only one," I decided to start a business to help other kids that are sick. So I brainstormed all my ideas in the back of the car to get another doctor appointment, and at the end of the car trip, I had a website and business plan done, which was insane. I just did all my ideas and I wrote them all down and Mum just helped me organize them. Then what were you—
Mon & Mazz (Host) · 11:45
yeah, when you were 6, doing a business plan was not in any shape or form in my headspace to be. I was not doing that at 6. How the heck did that come to you?
Siobhan Wilson (Guest) · 11:55
I'd say Mama Bear. Yes, there's a clever Mama Bear.
Mon & Mazz (Host) · 12:01
Is that true, Siobhan, or am I just suggesting?
Siobhan Wilson (Guest) · 12:03
Yeah, Mum was very supportive of my dreams, so she didn't think it was going to last, you know. I— in the back of the car, you'll see the girls saying, I want to start a business. Oh yeah, 'Hey, that's cute, you know, you wanted to be a vet yesterday.' So she was very supportive though, like she, she helped me rearrange all my ideas. So I came up with all the ideas and everything myself, but it was through her teaching me about the magic, through her encouraging the education, encouraging me to think about things that are happening in our world and how to fix them. The creativity that she taught me was the thing that really helped me along it. And when she helped me organize all my ideas, she saw that it could be a potential for a company. So I just kept working on my ideas for 4 years until I was able to register my companies at 10 years old.
Mon & Mazz (Host) · 12:52
Oh my goodness me, at 10 years old! I love it. Can I just ask, did your mum have a business background, or was she—
Siobhan Wilson (Guest) · 12:59
no, no.
Mon & Mazz (Host) · 13:01
Did your older siblings? Because sometimes the youngest is immersed with beautiful big minds around them, or mature minds.
Siobhan Wilson (Guest) · 13:08
Did any of them guide you at all with your older siblings? I've never heard that in my life.
Mon & Mazz (Host) · 13:14
That is just amazing. And I've been a recruiter for many years and interviewed lots of people, and I know people that haven't done a business plan ever in their lives, you know.
Siobhan Wilson (Guest) · 13:23
Luckily we've got AI now.
Mon & Mazz (Host) · 13:24
In that sense, it's easier. But that's amazing, Siobhan.
Siobhan Wilson (Guest) · 13:27
My brother was in the leadership management space. But he was more in the sports space at that time. So when I was younger, I didn't get to talk to a lot of my siblings because they were far away, but we sort of kept getting in contact and stuff because I only knew about 3 of my siblings instead of 4 of them. So, but yeah, most of them were in like the nursing and that kind of background. And then when I got to hear about my journey with my brother, right now I get to talk to him about it. I went to to his sporting precinct and he taught me all the stuff around leadership and management. And now I'm at TAFE doing a dual diploma in leadership and management in sport. So I'm really interested in business and leadership and management, and the leadership management I think came from my brother. And then just like all the ideas just came from my creativity, thanks to my mum for sharing about how I need to think critically about things. I need to think creatively about things, think outside the box. Like, the things in this room are not the things that are going to be here in 20 years' time. We need to think outside of this room. Like, look at all the unconventional things that you can think about to then create solutions to today's problems. Yeah, I have a lot of people to thank.
Mon & Mazz (Host) · 14:45
Your class. I'm just even learning from you right now, Siobhan, and for the fact that, you know, you're seriously a lot younger than myself Mon, what an inspiration. Siobhan, thank you for sharing everything that you have already about, you know, what life has been like growing up and, and some of the challenges that you face, but also a lot of the things that have been super helpful. And obviously mum's been a real cornerstone for you in terms of your internal resilience and helping inspire you to get your business and, and just kind of get on with it. I know that you and I talked about some really profound moments in your life, and that was to do with the anaphylaxis. And I'm wondering if you can just talk about the time that was really impactful when you were at an awards ceremony, because I know this really leads into some of the work that you do now and awareness. So do you want to just take us on a bit of a journey with what happened there and what's sort of happened as a, on the back end as a result?
Siobhan Wilson (Guest) · 15:44
Yeah, sure. Obviously it's still like a raw thing because it happened in October of 2024. It still feels like it was last year, but it's not. We're in 2026 at the moment, so it still feels like it was last year, even though it's been over a year. To give you some context, I have anaphylaxis and I've had anaphylaxis since I was in kindergarten and I have had 7 anaphylaxis episodes and I had, I believe it was a few in one month when I was younger because we still had to figure out what I was allergic to. So the thing is, when you have anaphylaxis, you have to wait 6 weeks until you can get allergy testing, until your body has actually gone back to normal.
Mon & Mazz (Host) · 16:27
Yeah, I'll just pause you just briefly for that. I think we take for granted that everybody understands. I think anaphylaxis is a pretty widely understood term, but for just the people watching, anaphylaxis is different from just having a little allergic reaction. It is a severe, life-threatening allergic reaction to whether it's something in the environment, a food ingested, something on the skin that has a profound full-body reaction that is life-threatening. I'm sure most of you have I've heard that, you know, a lot of people with anaphylaxis, for the risk of, will carry an EpiPen and an adrenaline pen.
Siobhan Wilson (Guest) · 17:01
So yeah, anaphylaxis, it is very life-threatening, and I do know other people who have anaphylaxis, but it's been quite a whirlwind with it, and I've had multiple episodes of it. However, being in the awards dinner ceremony, I was going to my local awards ceremony for my business, and I was trying to see if I had gotten the Young Entrepreneur of the Year Award. So with my mentors, my friend even came to the awards, so we almost a full table of the people who were there to support me, which was insane because I absolutely couldn't be doing any of my business stuff without all the people who support me. So before I went to the awards dinner, I had checked with the restaurant and said, "These are my allergies, put them in: dairy, nuts, you know, please make sure there's no cross-contamination because 1,000th of a mil of milk can kill me." And then get to the awards, I check 4 more times. So I've checked like 6 times, I've called up the restaurant, all this sort of stuff. To make sure that I am safe, that the food is safe. And I remember, like, eating the food. I was also having asthma at the time, so I didn't know what, what was happening. I had a bit of a tingly tongue and everything, but I knew that that could just be my anxiety because I often get that. I often just get the, oh, you know, my tongue's tingly, or my lips feel weird, you know, because it's anxiety around dying. That's why I'm eating the food. And that's legitimate. Yeah, exactly. It's basically looking down at your plate and it's kind of like seeing poison all over the plate, you know, what if it is poison? It's quite stressful because this Ashley food, this food is literally poison to you if it has dairy or nuts in it. So I was like eating all the food. I ate most of the meal and I started to feel a bit bleh, but I was like, oh, you know, it's just my anxiety. My vision went a bit weird and I went, it's okay. You know, we're out in the woods, you know, there are lights everywhere. You know, of course you're feeling a bit weird and crazy because, um, you know, It's a high-stress environment. They're announcing all the winners. There's food that you can't eat all around you, but your food is safe, you know, drinks and alcohol and everything around you. Of course it's stressful, you know, of course you're going to be feeling a bit like weird and crazy and right inside because you're stressed. So I ate my own safe food that I brought with me just because I was like, oh, I don't trust it anymore. I know I'll be fine, but I don't trust it anymore. And then I remember receiving my award. It was a little bit of a blur. So they called the Young Friend of the Year. Stood up, walked all over to the stage and got my award. My blood pressure could have dropped at any time and I could have passed out and gotten the award. I remember vaguely them talking about me and what I was doing. She couldn't remember how to say the name of one of my products. I told her that it was correct even though it was wrong afterwards because my brain wasn't really there and I was like, "Oh, I'm just stressed." But I walked down and got photos with everyone, went back to the table went till the end of the night, took my friend back, and then going on the way home, I realized that something wasn't right, like finally, because I'd been out of the environment, had my puffers multiple times. It was quite stressful though, because I didn't want to tell anyone, I didn't want to alarm anyone, you know, I thought maybe, like, because I started to feel like I needed to, like, go to the toilet, like in the car, and I was like, "No, no, it's probably just my bowel dysfunction." Like, I've never had this before, ever. Like, what, with anaphylaxis? So even though it's a sign, it's just probably my bad bladder dysfunction. I've never had this, but, you know, oh, it's probably okay. And I just started to feel worse and worse and worse. And so we got home and everything, and I started to have trouble breathing more and more and more. And that was in my safe environment, so I feel like it was just like a really high intense trying to show everyone that I'm okay, and then it just like sort of dropped all of a sudden. So everything just went crazy. So I tried to have my puffer, and then I just like— something just felt off, you know. I didn't even have a rash, which is what I usually get. So I thought, oh, it's not anaphylaxis, but I'm the rash, because that's my usual thing. But the problem with anaphylaxis is everything is different, every episode is different. The fact that I lasted about an hour before actually injecting the epinephrine is actually insane, because I could have dropped dead at any point and I want to stress to the audience that anaphylaxis is not to be messed with. You can die within 5 minutes of having the allergen bite. It's not, oh yeah, just a wait and see game. It is actually very intense having anaphylaxis. It's been quite a whirlwind, but that's basically what happened with the anaphylaxis. And so we called the ambulance. The adrenaline were actually not working. So the problem is because we waited too long, we believe The epinephrine had not really any effect. It didn't do anything. I was still getting progressively worse. Mum was talking to the ambulance about, oh hey, like on the phone waiting for the ambulance, do I give her the other epinephrine? They're like, I don't know, do I give it to her or not? I'm giving it to her. So I had 2 EpiPens at home and then the ambulance came and they gave me multiple more adrenaline, like every 5 minutes, and they put like oxygen on as well. They were also fighting to put adrenaline in the oxygen mask, but they had to get special permission for that. And one of them even wanted to break protocol because they were like, this is really bad. Yeah, I had an equivalent of 12 EpiPens before I could breathe. The ambulance was running out of adrenaline and they were begging the local hospital to take me, but because I was too complex, the hospital refused. So that was really stressful for the paramedics because I heard them on the phone saying, "I don't think she's going to make it the extra 15 minutes to the hospital," and the other one's like, "Yeah, yeah." I'm like, "I'm right here! Hello!" So the whole hospital ride, I'm like, "I'm gonna die, I'm gonna die, I'm gonna die, I'm gonna die." Which would increase your stress levels and your airway. The ambulance has given up on me, okay? I'm gonna die in 15 minutes. What can I see? I can see the ambulance stewards, and I can see all the medicines there. This is my last view of the world. So imagine just going to an awards dinner and then looking in an ambulance and going, this could be the last view that I ever have of my life. The last thing that I ever see is— wow.
Mon & Mazz (Host) · 23:22
I hope you know that reliving your story, that's huge. That is absolutely huge, Siobhan. That sense of powerlessness And it sounds to me, as you said, nobody that suffers anaphylaxis should waste any time. But it sounds to me like your mind was just so strong in trying to keep it all together at the event. That's what held you. The other thing, such a resilient human being. As a nurse, I'm sure Maz can make commentary about it because she's no doubt had experiences in this space. Yeah. And to your point, on a practical level, it's, you know, absolutely that EpiPens is, you know, you'd rather deal with the outfall of sort of tachycardia and, you know, all the crazy things that go on with having adrenaline and deal with that post. But the idea is that you want to get that severe reaction under some control till you can get into a controlled environment. So it is using the EpiPen, you know, if it's not improving, 'cause it will be like a little bit of a tidal wave and it will keep the reactions going to keep manifesting and keep going. So it's using your EpiPen if you're not seeing any improvement at all.
Siobhan Wilson (Guest) · 24:31
Can I add that it's never an embarrassment to have the EpiPen, even if you're wrong, you know, like even if you're at an awards dinner and you actually are having anaphylaxis, like don't just go to the toilets. Like actually you can have it in public. Like people are not going to judge you. They might seem like they're judging you, but they're actually worried about you. And I know it's stressful to make people worry, but at the end of the day, it's either they worry or you die. What would you prefer? You know?
Mon & Mazz (Host) · 24:59
Thank you for raising that too, because, you know, I mean, you know, we're so used to seeing people that, you know, have their preventative puffers, your Atrovent, you know, we're so used to seeing people go ch-ch-ch. Seriously, it's just not a big deal. But, you know, that's something that, you know, I don't think that I've actually really thought about too much, that, you know, the embarrassment factor. So thank you for raising that for the people that, you know, this is their real life, their real world. Time is absolutely of the essence. So thank you for highlighting that.
Siobhan Wilson (Guest) · 25:26
Siobhan, yeah, thank you for that.
Mon & Mazz (Host) · 25:28
And I have to say it makes me think that, like, I know working at the school canteen as a volunteer, as a mum, I used to worry so much when there was a note that the child was anaphylactic and I was worried, you know, about every little moment as I prepared their meal. It makes me think we need to have, you know, an ad on television or something about it so people just understand it more. And just like with CPR, every Australian should know how to do CPR and the ABCD, as should everyone know exactly exactly how to use EpiPen and to respect it, you know, really understand what you've just said.
Siobhan Wilson (Guest) · 26:03
Yeah, thank you for your share. Thank you. It's really stressful though, like, because I was actually researching the guidelines for food labeling and food, like, manufacturing. And the problem is, at the moment, the food allergen stuff is if you can fully clean the machine after putting dairy on it, you don't have to list 'may contain dairy' or 'made on machinery with dairy.' And you can actually make make it dairy-free. That's exactly what happened when we actually researched as to what happened with my anaphylaxis. It was a dairy-free mashed potato. Dairy-free. They make it on the same machinery as all the butter and milk product mashed potato, and they didn't have to list it. Nowhere on the packet would it say, 'This is made on machinery or made on equipment that contains dairy.' Nothing, you know. And that's the stressful part. Because I've called up multiple companies and they've said, "Oh yeah, actually, I don't have it," or "We actually don't know if it's made on the same machinery." And it's kind of like saying to you, "We don't know if we have poison in our machines. We don't know if we've had poison on the machinery." You don't know? This is my life at risk, you know? And if there was any slight chance of there being poison on it, would you eat it?
Mon & Mazz (Host) · 27:20
No.
Siobhan Wilson (Guest) · 27:21
Would you want that? No, you'd want it to be listed, right? You'd want to know if there was a slight chance you could die by eating the product, right? Yeah. Like it's the same for allergies and a lot of people just think it's celiac disease or something. And you go to a restaurant and you go, oh, I have a dairy allergy. What can I have? And they go, oh, well, this is gluten-free. I don't care about gluten. I'm fine with gluten. I get that other people have gluten. Intolerances and things like that, but I could actually die. It's not like having gut problems and things like that. I could die by 1/1000th of a mil of this. I think there needs to be more awareness in our community, and I think the guidelines need to change in Australia because, oh, if there's bee pollen on any of your products, you have to list it, but nothing about the top 9 allergens.
Mon & Mazz (Host) · 28:11
I think we're really hearing your passion of going through the experiences that you have. And obviously the award ceremony experience, for want of a better term, the pinnacle of incredible severe reaction has been, you know, as you said, still quite traumatic to be reliving. And much respect to you for, you know, allowing us to be witness to you sharing that today. I think it's palpable, your passion for this. And just, you know, we're not talking about just, oh, I'm going to go home and have a really uncomfortable stomach now for a couple of days, whatever. This is life-threatening. And this This is your reality and it echoes the reality of so many people. Do you know the statistics, Siobhan, about how many people are dealing with sort of food allergy to the point of anaphylaxis?
Siobhan Wilson (Guest) · 28:58
Thousands, hundreds of thousands of people in our community. I can't remember the exact number, but I know like it is getting worse and worse and worse. And people ask me, why is that? And I go, it could be that people are actually being open about what they're actually allergic to. Because oftentimes it's an embarrassment. There are lots of kids in our community, like even as teenagers who go to youth camp and they have peanut butter and food all around them and stuff, and they participate in the peanut butter challenges because their friends tell them to. Their friends want them to not die. They don't know that they have anaphylaxis, but be seen as cool. And like, even I know some people with anaphylaxis who go, "Oh yeah, I don't really need my EpiPen with me." And I go, "Why not? You need it everywhere you go," you know? So I think that people have been a bit blasé about it, but now it's becoming like, it's becoming more open that, hey, it's okay to have allergies. Like it's a bad thing, but it's not a bad thing on you. It's a bad thing how your body actually sees the food. Your body sees the food as poison. So you need to like avoid it. But if you do come in contact with it, you need your medication with you. Got some stats here, doing a bit of research.
Mon & Mazz (Host) · 30:07
Okay.
Siobhan Wilson (Guest) · 30:08
So Australia's regarded, get this, as the allergy capital of the world.
Mon & Mazz (Host) · 30:13
So more than 11,500 Australians present to emergency departments each year for anaphylaxis. There are approximately 2,500 to 12,000 hospital admissions annually. The rates are increasing, particularly over the last two decades. Almost 20 Australians die each year, so that's more than one a month. So it's a shocker. The work that you're doing, I hope that you've been approached by the Anaphylaxis Association, because if you haven't, I'll be forwarding your name as an ambassador, Siobhan, because the work you're doing and the awareness you're building is commendable.
Siobhan Wilson (Guest) · 30:48
Thank you. I haven't been contacted by them yet, but hopefully I'll be able to do some stuff with them soon. Send them this podcast. But another thing that people don't realize is like some of the doctors and nurses who treat it— nothing to do with you, Maz, you're fine— a lot of people also with anaphylaxis believe the false thing that antihistamines will help somehow with your allergens. And it's not the same as just sneezing. It might take the edge off, but you still need the epinephrine. You still need the adrenaline. It's not give the antihistamine and then that's it. There are some statistics on that as well. And another thing is with medications, that's been the most stressful thing for me as well. I've gone off many medications because they have like lactose in them and lactose can be from dairy. But the problem is they don't have to list whether it's from cow's milk protein or something else or medically made, and they don't have to say if it has dairy in it. Like, they don't have any ingredients on any of the things. They only have the active ingredients, right? So you don't know exactly what's in your product. You don't know exactly what you're having in your body. So I've had to call up many manufacturers and they go, 'Oh, don't have it, it's contraindicated for people with dairy allergy.' 'Oh, don't have it, it actually does have dairy in it.' on it. Oh, I don't know if it has dairy on it. We don't know if we've had it on the same machinery or not. Like, we need to change the labeling on our medications as well because I need to know if this medication is going to help me or kill me.
Mon & Mazz (Host) · 32:17
Yeah, absolutely. And they're worlds apart. There's been many things for you, Siobhan, that have been helpful in terms of your turning pain into purpose and starting your organization at the ripe old age of our Pixie Friends, to help other young people, a social enterprise helping other young people with disabilities and health challenges. And what we really want to find out from you, Siobhan, is what, after everything that you've been through, what would you see as your nuggets of wisdom that you could share with the audience that if they're going through health challenges in particular trying to navigate, obviously, in this space of anaphylaxis. That is an area that you're working in diligently to raise awareness in terms of the food companies, the medication companies, but just general public awareness. What have you found has been something— the things that have been really helpful to you to help navigate your life?
Siobhan Wilson (Guest) · 33:16
Yeah, for sure. I've done a lot of psychology and psychiatry in my life, and I have heard that that helps some people but oftentimes the people who are doing this psychology, they don't actually understand you. Like, they don't— they understand you and they try to help you. Nothing to do with, like, how bad they are. I'm just saying they're really great. They're really great for some people, and they've been really helpful for me. But at the end of the day, people don't understand anaphylaxis if they haven't experienced it themselves, you know. So they'll do, like, a mindfulness thing where they go, "Oh, imagine you're in a puddle of ice cream," and I'm like, I, I, so I'm in a puddle of poison. So I liked psychology and I help the psychologist now, but it was kind of a little bit hard for me. So I've also found like my mum has been incredible, family has been incredible, but I have found breathwork. I hate doing like the deep breathing and all that sort of stuff, you know, breathe in, breathe out, breathe in, breathe out. However, there's this guy called Bill Blakey and he has been the most incredible person. He's a PTSD veteran. And he has just done his breathwork facilitator course, and he takes you through peaks through your breathing. So instead of just, uh, deep breathing, he'll take you through slow breathing, then really intense breathing, and then slow breathing again. And he does multiple peaks throughout session with you, and it really helps you to heal your brain. So it's changing your brain's way of trauma. And I thought it sounded a bit woo-woo, but it's not. It's breathing. Trust me, it's just breathing. However, the things that open up, the things that you visualize, it's incredible. Like, when I closed my eyes, when I had all my PTSD and trauma, I could just see black. You know, there was no color, there was no, you know, little circles that are coming when you close your eyes. Close my eyes, there was nothing. It was just pitch black. And then since working with Bill, I've only done one session so far, I'm going to do more. I see color, and for the first time when I close my eyes, um, for a while. So that has been incredible to see. And he said that if you see color, that means that your brain is actually opening up and ready to be healed. So that has been really incredible for me. Music, like the music you're hearing today, but also handpan music. It's the most relaxation— it's so relaxing.
Mon & Mazz (Host) · 35:46
What music?
Siobhan Wilson (Guest) · 35:47
Handpan music. Hand and then pan music. I love it. It's unlike anything you've really heard before. It's like this metal steel drum, but it's like a musical instrument with like holes in it, so it's really, it's really cool. And also animals, like my guinea pigs, have been really supportive. And doing the business, helping others, removing myself from situations. Another thing is being a medic as well. I started to— I became a sports medic, an event medic, because I wanted to change the way I had care. Instead of hearing that I was going to die in 15 minutes, I'm going to try and reassure them as much as I can and support them as much as I can to feel like they're not the only ones going through the situation. And that, like, they feel safe with me. So not telling them they're going to be okay, but reassuring them that, you know, that they're with me and that I'm going to try and support them. Yeah.
Mon & Mazz (Host) · 36:45
And I imagine in that scenario too is, you know, without sort of giving ridiculous amounts of detail, but we're doing this now, this is what's happening, and just giving that constant reassurance. It's— I can't tell you the countless times that I have heard stories of you know, when there's been an acute event, medical event, or, you know, just someone's just received some shocking news about their health, receiving a diagnosis. It's often just the person that's holding that person's hand or a gentle touch on the shoulder. That's the thing that they remember in that moment, in amongst, you know, the haze of, oh my gosh, my brain can't compute what I've just been told or what's happening around me. But it's been that gentle just holding of a hand and that reassurance has meant everything. And that's the memory that sticks. On top of that, just very briefly, there's research done that how you are given a diagnosis, how that news is delivered, has a profound impact on the outcome of how that particular disease progresses, prognosis, etc. So for us people in the health profession, you know, We really need to be attuned to what's happening for that person. This is a first-time experience for many people, and, you know, we've been reminded of that as we've sort of had the beauty of interviewing many people that have gone through some health challenges and, you know, just being very aware and compassionate in all situations.
Siobhan Wilson (Guest) · 38:18
The physical support has been incredible. However, because I loved all the hugs when I was a kid and everything, However, it's been a lot more stressful for me since having anaphylaxis to connect with others, to hug them, to handshake them, because if they've had the allergen, it's like hugging someone who's covered in poison, basically. And then the poison goes on your clothes, and then if you, you know, rub your mouth on your clothes or whatever, you know, if some goes on you or you like, you touch your shirt, then you touch your face or whatever, like, could that kill you, you know? But I do want the physical touch. It's been the hardest thing for my mum, I believe, because she tried to just hug me all the time, or she was rubbing the side of my head when I was with the ambulance. So now she can't rub the side of my head because I'm like, I remember that when she did that, I turned to the ambo and asked her if I was going to die, and he said, we're doing everything we can. So it's crazy how touch can it impact the way you see trauma. But I am getting better, and I am asking for hugs sometimes. So we're getting there slowly. So she's been really patient with me, which has been great.
Mon & Mazz (Host) · 39:30
I'm a bit of a hugger, and I've got to remind myself not to just charge in and hug someone, but to actually ask for permission. Because it's so important, isn't it, to say, is it okay? You know, because there are many reasons, and you're just highlighting an incredible health reason it that someone doesn't want to be, has their space and needs their space. So thank you for sharing that, Siobhan. You've reminded me one more time. You've taught me already so much and I want to congratulate you too to say that you realize service is important for your work, that you're taking yourself off yourself. And I just really got respect in spades for you. And yeah, I really do hope you put your hand up to be an ambassador with the anaphylaxis anaphylaxis association, I'd be jumping off the phone today and getting that organized because you've got the skill and the insight. So yeah, thank you for your beautiful share.
Siobhan Wilson (Guest) · 40:21
Thank you.
Mon & Mazz (Host) · 40:21
In wrapping up, is there any final words, anything else that you wanted to add?
Siobhan Wilson (Guest) · 40:26
Yeah, I think to the people with anaphylaxis, don't be humiliated by what happened. It's hard to not worry about everything all the time, but try to reassure yourself as much as you can. And believe in your power to heal yourself. And for the carers, thank you for what you've done to support these people. But remember that we need space and time to heal ourselves, and your patience and reassurance is just what we need. So thank you.
Mon & Mazz (Host) · 40:56
What a beautiful note to wrap up on. Thank you so much for being with us today, Siobhan. I think Mon and I are quite blown away. We are.
Siobhan Wilson (Guest) · 41:07
It was just a blow away.
Mon & Mazz (Host) · 41:09
That was such a beautiful recording.
Siobhan Wilson (Guest) · 41:11
Thank you for having me.
Mon & Mazz (Host) · 41:17
Thank you for joining us on The Grit Diaries: From Grit to Grace. If today's story has moved you, share it with someone who needs a little hope. Remember, from grit we can find grace, and from grace we can find and inspiration. Until next time, look for the joy, keep safe, stay grounded, and never forget that there is a strength within your own story.
Siobhan Wilson (Guest) · 41:43
Take care.
You don't have to be in crisis to call.
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