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Exciting
new Hangout
with lots of
resources
Welcome to the HAEi Youngsters’ Hangout!
We are happy you could join us 🙂 On this page, you will find short videos, blogs, and stories to help you learn more about HAE and get inspired by other people’s stories.
Welcome to the HAEi Youngsters’ Community
Meet HAEi Youngsters’ Community Coordinator, Nevena Tsutsumanova, who welcomes everybody to the Youngsters’ Community (2:30)
More Resources about the Youngsters’ Community
Being part of the HAEi Youngsters’ Community
Hana Faulds is a member of the HAEi Youngsters’ Advisory Group and in this video she tells us what it means to her being involved in the community (2:08)
More Resources from Hana
Quick links by topic
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Health and Wellbeing
Wellbeing is a term that describes how well you feel about yourself and your life in general. Wellbeing is not just a feeling or emotion – nor is it the absence of disease. Instead, it’s the combination of feeling and being physically, mentally, and emotionally healthy. In this category, you will find short videos that will focus on mental health and HAE, motivation, and wellbeing.
Understanding Anxiety and HAE
In this HAEA Youth Edition Webinar, Lisa Facciolla from the US HAEA introduces the webinar focusing on understanding anxiety and HAE (2:47)
What is Anxiety?
Listen to Katherine Omoifo tell about her experiences in working with people who have dealt with anxiety and give some tips on how to manage anxiety in your life (3:22 min)
How does Anxiety Impact me?
Listen to Katherine Omoifo talk about how anxiety and HAE intertwine and how HAE could cause anxiety and how anxiety could impact HAE (6:05 min)
How does Anxiety Impact me?
Listen to Hannah’s story and her experience dealing with anxiety. (6:08 min)
How can Parents help?
Tips to guide parents in ways they can help their children when dealing with anxiety. (2:09 min)
More Resources about Health and Wellbeing
Have a great day!
In this video, Motivator Mark Anthony gives a motivational talk about having a great day (4:48 min)
Have a great day!
In this video, Motivator Mark Anthony gives a motivational talk about having a great day (4:48 min)
Red and green glasses on!
In this video, Motivator Mark Anthony gives a motivational talk about how to change your mindset and achieve your goals (6:54 min)
Being a shapeshifter
In this video talk from Motivator Mark Anthony you will hear a short about how being a shapeshifter can help you achieve your goals (5:41 min)
Quick links by topic
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Experts
Hear from international experts and learn everything about HAE. In this category, you can find short videos that answer specific questions about HAE, medication, and more.
Pregnant Women and Children
Henriette Farkas, MD, PhD, DSc tells us about Pregnant Woman and Children. In this video she answers the three questions: 1) What should I do if I want to get pregnant?, 2) What should I do if I do not want to get pregnant?, and 3) What should I expect during pregnancy? (3:38 min)
Pregnant Women and Children
Henriette Farkas, MD, PhD, DSc tells us about Pregnant Woman and Children. In this video she answers the two questions: 1) Has the newborn inherited the disease? and 2) When and on which part of my body do my symptoms occur? (3:21 min)
Pregnant Women and Children
Henriette Farkas, MD, PhD, DSc tells us about Pregnant Woman and Children. In this video she answers the three questions: 1) What should I avoid? Shall I do any sports?, 2) What kind of medications can I use?, and 3) Can I get vaccines? (3:21 min)
More Resources Pregnancy and Children
Quick links by topic
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HAEi Resources
Have a look at some of HAEi’s resources available online
HAE Companion – your pocketsize travelpartner
In this video, youngster Hana Faulds tells us how she has benefitted from using HAE Companion on her travels. (1:28 min)
Going Abroad?
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The HAEi Youngsters team is here to support you. Whether you plan a holiday, a gap year, or an education abroad, we have collected 5 things to think of while packing your bags:
- Pack enough medicine
- Emergency Cards
- Doctor’s letter
- Emergency Plan
- Know where to find …
Track your HAE with HAE TrackR
Youngster Eirini Giannakidi tells us about her experiences with using the electronic diary from HAEi, HAE TrackR (2:28 min)
Quick links by topic
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Patient Stories
We believe that everyone has a story to share, especially when it comes to HAE. Here is a collection of real-life HAE patients’ stories to help you relate, understand, or get inspired on your journey
Nanna’s Advocacy Story
In this video, Nanna from Denmark tells us her story about becoming an HAE advocate and being involved in both the HAEi Youngsters’ Community and her national Member Organization, HAE Scandinavia (5:51 min)
Live life to the fullest
Hear Rashad Matraji from the United Arabic Emirates tell how he lives his life to the fullest despite his HAE diagnosis (6:51 min)
Joud’s HAE story
Joud from Lebanon is 12 years old and has HAE, but that does not stop her from living her life and doing what she loves. Hear her story in this video (3:13 min)
Eirini’s HAE story
Eirini from Greece has HAE and is the only one in her family. Listen to Eirini’s journey with HAE and how she has found the confidence she has today! (6:29 min)
Catalina’s HAE story
Catalina is from Buenos Aires, Argentina and is an HAE patient. Catalina has a shares her journey with HAE with our wonderful community in her video as well as a blog on our website. (4:36 min)
Quick links by topic
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Resources for Parents and Kids
Welcome to the parents’ corner! Make yourself a cup of coffee or tea, and dive in.
This is also where you can find books, activities, and stories from our HAEi member organizations around the world. All resources aim to help children better understand, manage, and cope with HAE while offering fun ways for them to feel inspired, empowered, and connected to other kids in the community.
Being a parent to a child with HAE
In this video, Jørn Schultz-Boysen, who has HAE himself, tells us about being a caregiver – a parent – to his son who also has HAE. (5:00 min)
More Resources for Parents and Kids
In the ‘For Kids’ section of this website, you will find books, coloring pages, and infographics to help you start a conversation about HAE and empower you as a patient.
Go to Resources & Tools in the navigation and you will find the ‘For Kids’ section all to the right.
Quick links by topic
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