🤗

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)

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)

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)

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)

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)

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?

🧳

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:

  1. Pack enough medicine
  2. Emergency Cards
  3. Doctor’s letter
  4. Emergency Plan
  5. Know where to find …

>> Click to find the full overview

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)

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)

More Patient Stories

📖

Would you like to read Catalina’s story?
You can find it here.

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.