#togetherapart: Meet Nanna Maria

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 Nanna Maria

I’m 18 years old

I’m a HAE patient

And I live in Denmark

I hope that HAE patients in the future:
that HAE patients can live a completely normal life without fearing anything and that we together can create a better quality of life.

The HAEi Youngsters’ Community is important because:
The HAEi Youngsters' Community is very important because this is a platform where youths with HAE can come together and learn more about HAE and most importantly knowing that they are not alone! This community helps creating a better quality of life by making HAE a positive thing!

My favorite quote is:
My favorite quote must be from Winnie the Pooh; "Promise me you'll always remember: Your braver than you believe, stronger than you seem, and smarter than you think"

‘Creating a Path to Better Health’ means:
Creating a Path to Better Health means to me that we as a community can create resources, support and a positive perspective on HAE that makes us able to control HAE and not allowing HAE to control us. Creating a Path to Better Health does also mean to me that we as HAE patient can live a completely normal life.

This is my personal story:
I was diagnosed with HAE when I was born because my dad has HAE. Growing up with HAE I had many insecurities and I felt different from everyone else. I had my first HAE attack when I was 10 years old and after my first attack, I became more insecure about myself and how others would react on HAE – I feared that I would be treated differently or that my friends wouldn’t accept me for who I am. Growing up I also experience misunderstandings and met doctors who didn’t know about HAE. This led to a very unpleasant experience when I was around 12 years old at a hospital in Denmark. The doctors wouldn’t believe me and wanted to treat me for something else than HAE… This was a scary situation and I remember that I tried to defend my case together with my mom. Luckily, after a long time, I got my medication and was treated correctly. Learning self-administration and self-treatment have helped me gain more confidence when it comes to HAE. But HAE is not only bad experiences and pain – for me is it so much more. HAE gives me so many opportunities and international friends. HAE gives me something important to fight for. Even though HAE is annoying is it still something I’m grateful for having because of the global conferences, the strong communities we have created, and the most amazing friendships that comes along. I have written an article about my HAE story and the freedom that comes with self-administration – if you would like to read more. “The freedom that comes with self-administration of HAE”.

#togetherapart – meet us …