Two of the HAEi Youngsters Community members have recently joined the Board of their national member organization, HAE Scandinavia. Nevena Tsutsumanova, HAEi’s Operations Manager, had a Zoom sit down with Nanna (20) and Victoria (21) to ask them about how their participation on the HAE Scandinavia board will bring an important perspective to the organization as well as the local youth advocacy movement.

I have to say it is amazing that the two of you are now on the Board of HAE Scandinavia! How did that happen?

Victoria: I think I can speak for both of us when I say that being on the Board is fantastic! We have been active members of HAE Scandinavia for years. Nanna is a patient, and I am a caregiver for my dad and brother. It was very exciting for us to be asked to join the board!
What was your initial reaction?

Nanna: I think I was surprised, but at the same time very excited. Not so much for calling myself a Board member, but for the fact that our member organization recognizes the young people and wants to get them more involved.

What was your biggest motivation to join the member organization in the first place?

Victoria: HAE is kind of our family affair. I grew up looking at my loved ones’ struggles, and I just knew I wanted to help. I want to use my voice and experience to help others and raise awareness.

Nanna: Indeed, HAE is a family affair. I am an HAE patient, and I share my superpower with my dad, uncle, grandmother, and cousin. It was scary growing up with HAE and missing out on being a “normal” kid, and now when I look back at all those tough moments, I can see that I am a strong person today because of them. My biggest motivation to join the member organization was to finally find other people outside my family who have the same experiences and learn how to be more in control.

I love how you look at HAE as a superpower that you share with your family. Can you tell me more about the things you are working with as part of HAE Scandinavia?

Nanna: Victoria and I have the goal to find more young people in the Scandinavian countries and involve them in our member organization. We have been working with our social media account and helping the rest of the Board plan our HAE Scandinavia meeting in November 2021.

Victoria: We are thrilled to finally be able to meet face-to- face with our community. But most of all, we are looking forward to meeting other young people living with HAE in any form – patients, siblings, caregivers, partners.

Nanna: Another thing we are very happy about was the online activities we had for the hae day 🙂 10th anniversary this year. We were organizing online workouts with the global community and with the HAE Scandinavia community, and it was a lot of fun.

Victoria: Yes, it was very empowering to see our ideas come to life and how we can create awareness together.

Great job, ladies! I see that you are not wasting any time, and you have ideas flowing all around. What do you hope to achieve, and what are your hopes for the future?

Victoria: I like new challenges, and I found this great opportunity to get more knowledge about how an organization like HAE Scandinavia works. How they help people, work with doctors, plan and execute events. I also love helping other people! I am a people’s person, and my main goal is to create a space for young patients and caregivers where they can share everything, they have in mind about living with HAE freely. My hopes for the future are that we get to a point globally where HAE patients will have access to medication, and young people will grow up knowing more about HAE and not feel defined by it!

Nanna: I want to help create a space for young people in Scandinavia, where they feel safe to share their thoughts and experiences. HAE can be lonely sometimes; I have felt it, even though I am lucky to have the support of my family. I hope other young people won’t have to feel lonely anymore. I hope that we can, at some point, see HAE as a positive thing, something that does not control you because you are in control instead. I really hope that we have more young patients and caregivers join our meetings, and together we can work towards advocating for a better quality of life.

Wow! It makes me very happy to see young people like you two becoming strong advocates. I look forward to seeing what you come up with when you put your minds together. A final message to the youngsters around the world?

Nanna: Guys, get in touch with your national member organization. Get involved, learn new skills, be creative – that is how change happens!

Victoria: Use your voices, be fearless, and know you are not alone! There is a global HAE family you are born into. Reach out to your member organization; you never know the impact you can make until you try!