#togetherapart: Meet Maddie

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 Maddie

I’m 16 years old

I’m a HAE patient

And I live in United States

I hope that HAE patients in the future:
have the sense of community that we have now, know that they are not alone, and that every HAE patient has a medication that works for them and is affordable.

The HAEi Youngsters’ Community is important because:
it allows young HAE patients and their families the ability to connect with people in similar situations from all over the world.

My favorite quote is:
Failure means that you’re trying, and failing is much better than not trying at all.

‘Creating a Path to Better Health’ means:
finding new ways to be healthy that are more efficient and more helpful- physically, mentally, as a community, and individually.

This is my personal story:

I've been having attacks since age four. I would throw up every ten minutes for four hours. My parents didn't know what was wrong. Was I allergic to ice cream? No, and thank goodness for that! The day I got diagnosed, I was at the pool with my mom, my brother, and my grandma. My hand started to swell up. I didn't know what was happening. My mom looked at it, and tried to figure out what happened? Did I get stung by a bee? Was I having an allergic reaction? Then it clicked. She took me to the ER. My dad has HAE, but he doesn't have attacks because he is well-managed on his medication. My mom thought that I might have HAE too. One ER trip and blood test later, I was diagnosed with HAE type 1. This diagnosis impacted my life in a lot of ways. I went to the ER countless times as a child, and I couldn't get medication. Battling insurance companies for life-sustaining medication shouldn't be as hard as it has proved for my family.

HAE has a huge impact on my family. In a lot of ways, it is the thing that we think about most. I take my meds with me everywhere. I self-infuse every three days, plus breakthrough attacks. Hospital trips were regular occurances until I could get medication at home, at age 12. I've always been really good at communicating to people when I'm having an attack, because I know what the consequences are if I didn't. HAE affects every single aspect of my life, and my family. Even though it’s a struggle, I have my HAE family behind me, and that makes me very happy :)

#togetherapart – meet us …