By Nanna Boysen and Victoria Schultz-Boysen, board members of HAE Scandinavia
HAE Scandinavia celebrated its 20th anniversary on 12-14 November 2021 in Copenhagen, Denmark. Considering the global COVID-19 challenges, we are beyond grateful that patients, caregivers, physicians, and pharma companies could get together again.
Not only did HAE Scandinavia celebrate its first two decades that weekend, but it was also the first conference where HAE Scandinavia arranged something special for young patients and young caregivers. We came up with the idea as we have been part of the HAEi Youngsters’ Community and have participated in various activities – Nanna is also a member of the HAEi Youngsters Advisory Group.
We have found a lot of support, understanding, and new lifelong friendships in the global HAE community. We hope to bring a lot of what we have experienced into the Scandinavian organization and help other young patients with HAE feel more connected. The 2021 HAE Scandinavia Conference was a great start, and we are all looking forward to the next time we can meet.
Nanna: Being an HAE patient myself, I know that HAE comes with many challenges, but we do also gain a lot of strength. We all have our own stories and experiences of how HAE has affected our lives. I have been misdiagnosed by doctors and nurses and given the wrong treatment. For a long time during my childhood, I was afraid of being different from other children and therefore tried to hide my HAE. This meant that I didn’t like to go far away from home and my parents in case of an HAE attack. I feared not being close to medication because my friends would no longer just see me but also my HAE, which made me uncomfortable, and want to avoid these situations when I could.
Today I am thankful for being able to treat myself as I’m not afraid of showing my HAE anymore. I have gained a lot more confidence with my HAE due to advocating for it and meeting so many young people with the same diagnosis! These are only a few examples of what I have experienced and felt as an HAE patient. We all know HAE comes with many feelings, thoughts, and questions. Therefore, I believe that a youngsters support network for HAE Scandinavia could help answer some of the questions and make young patients and caregivers feel understood.
The global HAE community and the HAEi Youngsters’ Community are where I felt most at ease. Talking to other youngsters my age and sharing my experiences made me feel a part of something. Knowing that others are going through similar challenges gives me a whole new perspective on HAE. Meeting with youngsters helps one better understand and manage HAE. Through sharing my experiences, I managed to build on my confidence and understand that it helps to talk instead of keeping things to yourself.
I can only speak for myself here, but these are the positive things about HAE. Being a patient doesn’t seem so bad when you have support, treatments, and a community. I really hope that in Scandinavia, we can build a better environment for young patients and caregivers to share their experiences, feelings, thoughts, and questions and support each other in learning more about HAE. I want to work with HAE Scandinavia to build a youngster-friendly environment where youngsters can meet, feel understood, and feel safe, so no one feels alone with this disease, and to make HAE our superpower!
Victoria: I have always been surrounded by HAE patients who have been very passionate about HAE and wanted to make a change for all HAE patients worldwide. That inspired me, and it became very natural for me to stand up and make a difference as well. I joined the international HAEi Youngsters Community as a caregiver, and I have learned so much about HAE and what it is like to be young and live with such a life-threatening disease as HAE.
Over time, the HAE Youngsters’ Community has grown into a strong and rewarding forum where everyone can freely share their thoughts, feelings, hopes, dreams, as well as ups and downs with HAE. There is always plenty of understanding and sound advice to receive.
I have gotten to know so many amazing people, created friendships for life, gained more knowledge about different countries and cultures, and of course, I have learned so much more about HAE. I have also become aware of how I, as a caregiver, can give the best support possible and keep calm even in intense situations. At the same time, I have learned so much more about myself as a human being. I have been inspired to be the best support person possible by all the awesome and strong people I know with HAE and their caregivers. They are all true fighters, and I’m deeply fascinated by the joy of life shining from within them and their ability to fight for a better future with HAE.
I really hope that our first meeting for young patients and caregivers in Scandinavia will be the beginning of a very bright and exciting future for the HAE Scandinavia community for young people. By getting to know each other better, we can create an environment that enables turning HAE into our strength.
I wish for a Scandinavian community where we completely understand each other, give and receive good advice, get new ideas together and have fun! I really wish that for Scandinavia because I think it would be truly amazing! It is so important to know that you are not alone – we are here with open arms and hope to see more Scandinavian youngsters in the future :)
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Thank you for reading – you can find more information on the HAE Scandinavia website, haescan.org, and on Instagram, @haescandinavia
