Joanne Hagiliassis has lived through some scary situations as a mother of a son with anaphylaxis.
He has had multiple reactions growing up that led to hospital visits and even a stay in an ICU, where Hagiliassis thought they were going to lose him.
That’s why she felt an obligation to share what she has been through, so that maybe another child’s life can be saved and people can be educated on the life-threatening medical condition.
Anaphylaxis is a severe, life-threatening allergic reaction. It can happen seconds or minutes after you’ve been exposed to something you’re allergic to.
Hagiliassis co-founded Anaphylaxis Network Australia over a decade ago to raise awareness for families navigating life with severe allergies.
One of her more recent projects was the creation of a documentary about food allergies and anaphylaxis titled RISK.
“I’m trying to reach people who perhaps may have heard about food allergies, but have no actual experience with it and are not really aware how serious and life threatening it can be,” she told Neos Kosmos.
“That’s why we created this resource. So as a community, we can be better educated and possibly save a life.”
The documentary involves mothers of children who have anaphylaxis sharing their experiences.
Hagiliassis commended the families who shared their stories in her documentary.
“They’re quite raw and emotional topics that we’re addressing. So watching families share their stories, probably sharing one of the hardest days of their life, talking about when they nearly lost their child. To do that voluntarily and share that so that it can save another child’s life, it’s just a beautiful thing to witness.”
She said that a lot of time, when people first find out their child is severely allergic is when they have a reaction.
“That can be a really scary thing to witness. To see them go bright red, to see them stop breathing and go floppy.”
The charity is particularly focused on helping multicultural families who may face additional challenges, such as language barriers and cultural misunderstandings.
An example of this is the generational gap with grandparents or older relatives not fully understanding the severity of food allergies.
Hagiliassis felt bad for sharing the following story but did so because she knew it may resonate for many people.
“My son, his first big reaction was on Christmas Day and I had told my parents of his allergies and being Greek perhaps we were all a little bit ignorant,” she said.
“My dad did put one of his allergens in a meatball and even after I asked what was in he didn’t think it was important to share that information with me and my son did end up having an anaphylactic reaction.
“He was floppy and unconscious in my arms as an 18-month-old in front of all the family on Christmas Day. So that was a massive eye opener for my family.
“Thankfully he survived that but there’s situations where children don’t survive. It’s actually real. It’s not a joke.”
A lot of families have reached out to Hagiliassis about these cultural difficulties that can add a complexity to their relationships of perhaps not wanting to leave your child with grandparents.
She said she intends to recreate the documentary with subtitles and/or in different languages so that it is a resource for different communities.
“Whether it be Greek or different cultural backgrounds, because food is such an important part of our culture, there’s almost like a resistance from some families and almost some denial that there’s certain foods that these children can’t eat.”
Another instance was when another family member did not understand the seriousness until one time they rode in an ambulance with her and witnessed it.
“It shouldn’t have to get to that point, you might not get a second chance, so we have to share our experiences so other people get it. So other people see it and that’s why I created this documentary because you can feel it. You can see it. You can see the stories,” she said.
She hopes to have positive feedback from the community about the documentary.
“I do suffer from post-traumatic stress from the reactions my son had so opening up this topic, revisiting it, talking about it, it’s very triggering, but complacency can kill and I refuse that to be [in] the situation.”
“We need to have hard conversations and look at this stuff so that we can save lives.”
One of the biggest risk factors for food allergy deaths are during teenage and young adult ages because of risky behaviours like not carrying your EpiPen with you.
Hagiliassis’s charity is focussed on educating the community about carrying their life saving medication with them. Running events for young kids so they get normalised around carrying an EpiPen.
Her son Dean even helped in running some of the events through the years, to share with his fellow young peers its importance.
When asked about anaphylaxis in older people Hagiliassis said while it isn’t common in the current older generation as this generation gets older it’s definitely something that’s going to be an issue.
Hagiliassis also added that people don’t realise you can become at risk of anaphylaxis as an adult.
“You may never have had an allergy in your life and in fact, this has just happened to me recently. I’ve developed an anaphylaxis to onion. Never had onion allergy and now developed a severe allergy to onions,” Hagiliassis said.
“Anaphylaxis is not a preference or diet choice. It’s a life and death issue.”
Watch the full 17-minute documentary below
