#togetherapart: Meet Victoria

With the #TogetherApart initiative we have collected fun photos, videos, boomerangs and stories from you of your social distancing days and more – so we can all be #TogetherApart.

Hi – I’m Victoria

I’m 20 years old

I’m a Sibling of a HAE patient

And I live in Denmark

I hope that HAE patients in the future:
I hope that all HAE patients in the future will have access to medication, so they can live a happy life and feel free.

The HAEi Youngsters’ Community is important because:
It's like a family where you can be 100% yourself, be supported and understood even if you are a patient or a caregiver. It’s a very strong community of amazing passionate young people from all around the world advocating for HAE.

My favorite quote is:
"You never know how strong you are, until being strong is your only choice" - Bob Marley

‘Creating a Path to Better Health’ means:
I think ‘creating a Path to Better Health’ first of all means everyone with HAE have access to diagnosis, medication and the right treatment. Next I think the importance of a strong community has a huge influence and supports you to stay strong and keep a positive mindset even though it can be really hard to struggle with HAE.

This is my personal story:
I have always been surrounded by HAE patients in my family, who have been passionate about HAE and wanted to make a change for all HAE patients worldwide. In my nearest family my father and my younger brother are diagnosed with HAE. My brother was diagnosed when he was born, because my father has HAE. My younger brother is heavily attacked especially larynx and abdominal. Throughout our childhood, my brother has been in and out of the hospital, which not only affected him, but the entire family. I have been taught to be strong and to stay positive even in a tough situation. My brother is the main reason why I'm so passionate and I want to make a difference for him and all HAE patients world wide by being involved in the HAEi Youngsters Community.

#togetherapart – meet us …