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.