This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
The Youngsters Track in Americas: The Future is Bright
Following the keynote presentation, the unique HAEi Youngsters’ Community is split from the main patient and caregiver track. 90 registered young people and caregivers from 20 countries across the Americas region joined together for networking, education, and fun!
The team in Panama consisted of Victoria Schultz-Boysen, Kamila Moran Salaverry, Debs Corcoran and poet and nurse, Faye Marshall. They were supported by a host of volunteers, including social media interns who captured the conference from every angle.
Reflecting after the conference, Nevena Tsutsumanova, Manager, Youngster’s Community and Special Projects, told Global Perspectives: “We can safely say this is one of the biggest youngsters tracks we’ve had! We are grateful that so many young people made the trip and actively participated in all the activities we had, and thankful for all the hard work of the team. If you’d like to be part of this amazing community, just click the join us button on the Youngster’s Community page.” (https://youngsters.haei.org/)
This is the HAEi Youngsters Community, Friday evening
The opening of the Youngsters’ Track was a chance to introduce all that the Youngsters’ Community offers to young people living with HAE and their caregivers. To set the scene, Global Perspectives spoke with Victoria Schultz-Boysen. We asked her: What would you say to encourage more young people to be involved in HAE advocacy?
“Please don’t be afraid to reach out, whether to us or your organizations. We need you. When young people get together like this, great things are going to happen. For me, being in the Youngsters’ Community has helped me be more confident in myself. It has made me grow as a person”
Get to Know Each Other/Networking, Saturday morning
The second session started with an informal get-to-know-you session where young people could share thoughts, feelings, and experiences.
Introduction to LEAP 2024 and the Successful Class of 2023
Throughout the Youngsters’ Track, the delegates were introduced to the LEAP program. Debs Corcoran told them where the idea came from before explaining the education available to participants, both online and during a special LEAP meeting in Dubai. A special panel discussion of LEAP graduates gave their personal experiences and encouraged anyone 16-25 years old to speak with their Member Organization if they were interested in getting involved. More information is available on the dedicated HAEi Youngsters Community website: youngsters.haei.org/leap-welcome-program/
Face2Face with an HAE expert – Profs. Sandra Christiansen and Markus Magerl
Next, the program gave young people the chance to have their questions answered by an HAE expert. To accommodate the full array of topics, the Youngsters’ Track split into two broad age groups, each with their own expert.
Global Perspectives spoke to both HAE experts to learn about the session and the importance of asking questions. First up, we heard from Prof. Sandra Christiansen who led the session with our older Youngsters’ Track participants. We asked: What do young people with HAE want to know about their condition?
“I think one of the wonderful things about organizations like HAEi is it lifts a sense of isolation and aloneness off people.”
“My message to younger people is that it is happening to other people, and let’s talk about what you could expect. This is a variable disease for the individual, their families, and their lifetime. But we know what could happen, which means we can be prepared. For example, for younger people, puberty is a time when it’s like lighter fluid on a barbecue. They can have worsening attacks in terms of frequency and severity.”
“From the standpoint of HAE management, one should hope for the best and plan for the worst. That means you need to know about your on-demand therapy and the options for preventative therapy. Beyond that, you need to be prepared for things that will happen in your life. What if you want to use contraception? You want to use the options that will not make your HAE worse. Then, mainly directed at women, you can become pregnant, but you need to have a plan. There’s a lot of data that shows that people with HAE do just fine with getting pregnant, carrying to term, and giving birth. Be prepared to tell healthcare professionals about your therapy, what delivery you want, and what you are worried about afterward – let alone during the pregnancy- and you can make a plan together.”
Do young people ask unexpected questions?
“Some of the questions are personal concerns. With swelling, people are worried about lasting damage. Young men ask about genital swelling. It is rare but very, very alarming, and they ask: Is this going to go away? Is it going to cause any lasting damage? These are justifiable worries, and the answer is very reassuring- it will be okay after treatment for the attack.”
Next, we asked Prof. Markus Magerl about his session, after he’d finished chatting with the younger participants of the track:
“Young people have a completely different view from adults with HAE (and also physicians!), and they have their own anxieties and concerns about how they will live with a disease. Some of the questions might seem basic, but they are fundamental. For example, ‘What internal organs can be affected?’ The first step is to explain the anatomy of the organs and the abdominal cavity to explain then what happens in these organs when they are affected by an attack.”
“Another question is, ‘What makes me feel so strange when I have a swelling in the neck region?’ The underlying question is what exactly happens when there’s throat swelling. The tongue doesn’t usually completely close the airway, but it produces a lump or restriction. I think this question is driven by the concern of what if this happens in the future and ‘How do I imagine this disease activity inside me?’”
What would you say to young people about asking questions of doctors and experts?
“It’s extremely important to ask questions! The most fruitful part of this session was the questions. The answers were tailored rather than just background. I think it’s a patient’s duty to ask questions: to question the recommendations and advice from their doctor. Ask ‘Why is this?’ to better understand and find out if the advice is good for you – rather than advice given to anybody.”
Find Your Strength and Hold It Up: Creative Workshop
The Youngsters’ Track was built around the idea of storytelling. Faye Marshall facilitated a session on the power of words and the impact your words can have on other people.
Faye started with a panel discussion and asked participants to tell everyone their story. Following this, Faye led the young people in a storytelling session. Underneath every chair was an envelope filled with words. Working in pairs, participants used the words as prompts to talk and tell their own story to someone else. Before the session, Faye told us that she wanted participants to go away thinking, “I’m not alone,” and to understand the huge levels of compassion and support in this community.
Wrap Up the Youngsters Track
The Youngsters Track came to a close, sharing the support that continues through HAEi and its dedicated website for young people. Victoria told us that from her perspective, the Youngsters’ Community is vital because: “You know you’re not alone, that you have someone to rely on. It doesn’t matter where you are in the world, this community will support you, and you don’t have to explain anything. We want everyone out there to know that we’ve got your back, and we are one family.”
Faye Marshall is the resident poet and storyteller for the Youngsters’ Track. Global Perspectives sat down with her to understand more about why these sessions are so special.
What did you learn from the first workshop [held in Munich during the HAEi Regional Conference EMEA]?
“In Munich, I had the privilege of facilitating a poetry workshop to help people to recognize their strength and resilience. I learned that the community connection is incredibly strong. We talked about some pretty big things, like how HAE impacts people’s lives, whether patients or caregivers. Everyone wanted to share their experience. People were so respectful and so kind and compassionate to each other. There just seems to be a culture of respect and compassion that runs through the youngsters’ track. It was like it was like magic in the air.”
Things are a little different this time. What have you changed for this conference?
“The focus is still on resilience and strength and advocating for yourself. In Munich, we focused on poetry. In Panama, we’ll be talking about the power of stories and the power of language to create connections. The languages spoken in the room may be different, but the story you tell yourself is powerful in altering your perspective and helping you live with positivity.”
You are also a nurse; is language important from a clinical perspective, too?
“Yes, absolutely. As humans, we often measure things in time. We don’t often measure things in quality. It can be a privilege and honor to experience life with a condition that makes you value time in a different way. “
“Part of my day job is to equip people, including, young people, with ways to express themselves as accurately as possible. For example, it’s okay to have a down day. It’s okay to have a sad time. But language enables us to define what that sadness or that unhappiness is. ‘I’m sad’, might mean, ‘I’m disappointed’ or ‘I’m scared’ or ‘I’m lonely.’ By empowering people with language and words, we enable them to communicate more effectively with the people around them, because connection is paramount to everything. That’s where support is born.”
Find more feature articles from the 2024 HAEi Regional Conference Americas: