#togetherapart: Meet Carlie

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 Carlie

I’m 17 years old

I’m a HAE patient

And I live in United States

I hope that HAE patients in the future:
can look back at our generation and feel even more blessed than we do today in regards of the community of HAE and the medications provided to them. I look back on how my mom and grandpa's lives were living with HAE, and I see how far along research has come and I am so lucky! I hope that things just keep on advancing and the next generations can feel the same way!

The HAEi Youngsters’ Community is important because:
it allows for more awareness, and community! It's so easy to think that the only ones affected are the ones that we personally know. But the truth is, there are so many people around the world living with HAE. Some of them are being affected and don't even know what HAE is- therefore, they are not getting the appropriate medical treatment and emotional support. This is a chance to spread awareness and help people that we never even knew we could reach! This community is amazing and I love it!

My favorite quote is:
“You are the light of the world. A city set on a hill cannot be hidden" (Matthew 5:14). This scripture from the Bible is my favorite quote. I want to be a light and give God all of my glory. But this can apply to everyone- be an advocate! Do not hide who you are and shine your positivity for all to see!

‘Creating a Path to Better Health’ means:
Personally this phrase means to never give up and never settle for less just because of a challenge. Better health not only means medically and physically, but emotionally and mentally as well! There is always room for improvement.

This is my personal story:
It’s obvious that we live in a world where everyone feels like they need to “fit in” at times. Living with HAE makes it nearly impossible to feel “normal” since it is so rare. Growing up, I’ve always been very open about my blood disorder and never tried hiding it. However, I always felt like I was going in circles when I tried explaining it to people. Once I met the community of HAE, my whole perception of living with it has changed. Having a community of friends with HAE makes me feel like I have a purpose and I’m not alone. There are people who understand me & there are so many opportunities brought to me through the HAEA. Living with this blood disorder has brought so many challenges, but the people in this community make me feel worthy and loved!

#togetherapart – meet us …