Youngsters’ Track of EMEA 2023

This article is part of an extensive feature on the 2023 HAEi Regional Conference EMEA, published in Global Perspectives #2 2023

Friday evening

Following the Keynote Presentation, the unique HAEi Youngsters Community split from the main patient and caregiver track, 60 young people and caregivers from 39 countries across the EMEA region joined together for networking, education, and fun!

The Youngsters’ Advisory Group (YAG), comprised of 8 incredible young advocates, was critically involved in the planning and delivery of the program in the Youngsters’ Track.

Speaking before the start of the session, Nevena Tsutsumanova, Manager, Youngster’s Community and Special Projects, told us of her admiration for these young people: “I’m looking forward to this conference shining a light on the amazing work of this Advisory Group. I’m beyond grateful to work with these eight amazing individuals.”

The opening discussion in the Youngsters’ Track started with a question about how many youngsters were at a conference for the first time, with most present saying they were. The rest of the hour was a chance to introduce all the Youngsters’ Track offers to people living with HAE and their caregivers.

Saturday morning

Opening the second session was an informal get-to-know-you session where young people could share thoughts, feelings, and experiences about their disease.

One of the YAG members, Isabel, told us that being at the event was a chance to connect with others. She said: “You just walk into the room and sigh in relief because everyone knows there’s nothing you have to keep hidden. Everyone knows what you’re going through and has been through similar.”

Another YAG member, Hana, said that these conferences were amazing for her: “Youngsters are able to make friends much easier because they have something huge in common. The first conference I came to, we just made jokes about our swollen hands and looking like crazy people, but we loved it, had a huge laugh, and became friends.”

Introduction to LEAP and the Successful Class of 2023

Nevena gave an update on the first full year of the HAEi LEAP program and the successful class of 2023. She encouraged everyone between 16-25 to speak with their Member Organization if they were interested in getting involved and stressed the valuable education opportunities offered to young people with HAE.

Face2Face with an HAE expert – Dr. Hilary Longhurst and Dr. Marcin Stobiecki

Next, the program moved on to a highly anticipated session: the chance to have their burning questions answered by an HAE expert.

The Youngsters’ Track split into two broad age groups to accommodate a wide range of questions. For the group with Dr. Longhurst, there was an interesting shift to questions about the future, being an adult, having a relationship, starting a family, and treating children with HAE. We are happy that the young people felt comfortable asking all these questions.

The session with Dr. Stobiecki focused on understanding HAE, what is happening with your body, triggers, and how to prevent/treat your attacks.

We caught up with Dr. Hilary Longhurst after her session with young people. We asked her about the questions she commonly gets asked and how she responds. She told us: “The main questions from young people were about wanting to both work and study abroad, and travel. Ten years ago, that question would be met with disbelief. But now the answer is, of course, how can we make it happen? It’s very good to see.”

The whole Youngsters’ Track thanked Dr. Hilary Longhurst and Dr. Marcin Stobiecki for their participation and for creating a safe space for the youngsters.

Get to Know Each Other/Networking

As part of the networking, we shared a series of motivational postcards. The young people took the idea by heart and not only exchanged cards but also left some of them behind to be digitized and made available for the global community. You can find them on youngsters.haei.org under ‘community postcards.’

Find Your Strength and Hold It Up: Panel on Selfcare and Wellbeing

One of the new sessions of the Youngsters’ Track was a self-care and wellbeing panel discussion with EMEA youngsters and members of the YAG. Hana told us, “We’ve been working together on this conference so hard we really feel a part of it. It feels like it’s bringing community one step further.”

It was the first time some presenters shared their experiences, and the session’s goal was to encourage the audience to share their experiences, too. The setting was relaxed, with an open floor for discussion and 7 panelists happy to share their thoughts on the two topics.

Faye Marshall, a clinical nurse working to support people who have conditions that are managed rather than can be cured, hosted the panel. She introduced her contribution by telling us: “I am used to helping people navigate their experiences and helping people to feel heard, seen and exploring emotions in a safe way. I will be the treasure hunter for the discussion, and there’s lots of treasure amongst these wonderful young people.”

The level of audience engagement was extremely high, with lots of enthusiasm and questions for the panel.

One panel member described how these sessions help: “empowering young people to see that they can take control of their HAE by being more involved. We try to show them they can have control over this part of their life.”

Another hoped that the impact of the whole meeting would be similar to: “the sensation I got walking into my first international conference, just having that community and knowing that there are people out there that will support you when you need help.”

Sharing her perspective, Jess told us: “Before we had good medication, I never saw myself leaving Australia. Suddenly, I’m in Germany, halfway around the world. It’s the sense of freedom and liberation to change the way I thought my life would go.”

Summing up the value of the session and the Youngsters’ Track, Faye said: “Young people have their whole life ahead of them. People with HAE should be able to embrace and celebrate their life like everybody else.”

Find Your Strength and Hold It Up: Creative Workshop

The following session got the youngsters to use creative writing to process and share their experiences, connect, and recognize their resilience.

Faye took the youngsters on a quick trip through poetry as part of a beautiful 30-minute workshop. She promised everyone that by the end, they would all be poets. We asked Faye why poetry and creative writing was so important. She told us: “Creative work helps people express their feelings in a less conventional way. Poetry is a wonderful way to connect with yourself to become your own friend. There’s immense therapeutic benefit in expressing yourself.”

Youngsters dove into the art of words and started expressing their feelings after only 15 minutes of exercises and associations. They then spent the final 15 minutes writing a poem together. The thought of 60 people writing one piece of poetry together sounds overwhelming to many people, but they made it happen.

The hope is that the poem the youngsters created, reproduced on the next page, will become an anthem of the HAEi Youngsters’ Community and a symbol of how it supports everyone.

Wrap Up the Youngsters Track

As she wrapped up the Youngsters’ Track, Nevena asked for a show of hands. “How many of you will join us next time she asked?” Every hand in the room went up, indeed a positive sign.

Some participants also gave messages to those unable to attend this meeting. Faye told us she would tell young people not present: “Always be ready for possibilities.”

From the YAG, the inspiring message was: “Don’t be shy to reach out. Even if you can’t attend a conference, there are plenty of ways to get involved: we have online hangouts and lots of social media engagement. You don’t have to do it alone. You’ve got this.”

In conclusion, Nevena thanked all the participants and presenters for their immense contributions. She told the young people that a similar conference is soon to take place in the Americas and that there are huge plans to build on the success of these regional conferences.

Please note that the poem explores emotionally sensitive themes, including compassion, kindness and resilience. You may wish to consider this before reading or sharing.