How Youth Voice and Allergy Advocacy Have Changed My Life

Living with food allergies comes with so many different challenges, especially when you're a teenager or young person. You're often thrown in at the deep end, navigating the medical world from such a young age while also dealing with peer pressure and simply trying to grow up. It can be difficult to feel a sense of control or agency, and there's often a lot of fear and uncertainty about the future. This is exactly how I felt four years ago.

I've lived with food allergies all my life and have often found them to be a really isolating experience. Growing up, I was lucky to have friends with allergies who understood, and I had an incredibly supportive group of friends at my taekwondo club. Even so, I often felt stuck. Research felt slow, there were very few opportunities for young people to get involved, and the allergy community felt small.

Then, in 2022, I was diagnosed with a long-term health condition that completely turned my world upside down. I had to leave university, stop doing taekwondo, and completely rethink the future I'd planned for myself. Living with food allergies was already challenging, but now I felt like I'd lost even more of my independence and a huge part of my identity. I didn't know what came next. Then I discovered Youth Voice and allergy advocacy.

First, I joined the Allergy UK Youth Group in November 2022, and I have been involved ever since. The group has grown and has allowed me to meet other young people who have not just allergies, but also other health conditions like me. It's allowed me to feel a sense of community and connection. It's also allowed me to get involved in learning more about the allergy world here in the UK and the latest research developments. The group has gone through quite a lot, and it's starting to be set up more formally again. We are hoping to get more involved in different advocacy projects in the future, including going to Parliament.

I've also been a member of FARE since 2024, and I got involved after taking a bit of a chance because I'm not from America; I'm from Northern Ireland, and I was really lucky to be allowed to get involved. I've been involved in so many amazing projects over the past two years, and I'm very sad that my time in TAG is coming to an end next year, but it's been an incredible opportunity. It's given me a sense of agency and a voice over my allergies. I think that, as young people, we sometimes don't feel like we are allowed to share our lived experiences, and I think they're so powerful. It's also really allowed me to step out of my comfort zone and try new things. I've been able to contribute to blogs, contribute to a children's book, get involved in many different creative projects, and really advocate for positive change. It's also been really nice to meet other people who experience similar things to me, want to continue making a positive difference, and do so with such bravery and confidence. It's really inspiring, and whenever I go to a meeting, I always feel really encouraged and want to try to help and support everybody's projects in any way that I can because some amazing projects are being implemented by young people all across the US, and I think that, as somebody who lives in the UK, there's a lot that the food allergy community here can learn from people in America, and obviously vice versa. I think that with the TAG projects, there's so much positive impact that something similar would have here in the UK and also locally here in Northern Ireland. That is something that I now have a lot of confidence in—hopefully bringing it to the forefront of food allergy advocacy here in Northern Ireland by implementing something similar.

More recently, I have been involved with the Food Allergy Northern Ireland group, which was set up by a group of parents who have children with food allergies. I am now the Youth Engagement Representative, and we recently had the launch of the allergy strategy. We are hoping to continue the incredible work that has been started to raise the profile of food allergy awareness here in Northern Ireland, and also hopefully set up groups to support young people and help them to grow their confidence, and I'm really looking forward to helping to set up those groups and further support the development of the charity.

My advice for anybody living with allergies who wants to get involved in advocacy is that your experiences really do matter. It's not easy talking about your lived experiences, but sharing your story, joining a group like FARE, writing a blog, or just having conversations in your community about the impact that allergies have, or speaking out in your school assembly, can really start your journey and help you to grow in confidence. It has also helped me to remember that although living with a health condition and living with allergies have impacted my life significantly, they don't define my life, and they've allowed me to help shape, hopefully, a more positive future for others and be that person that younger Eden really needed when she was navigating those early stages of living with food allergies and living with other health conditions. Advocacy has been such a positive experience for me, and I would highly recommend that anyone get involved. It's not always the easiest thing to do, but you definitely won't regret it.