#togetherapart: Meet Karlie

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 Karlie

I’m 19 years old

I’m a HAE patient

And I live in United States

I hope that HAE patients in the future:
are not afraid to share their struggle with the disease with others, and not be ashamed of it.

The HAEi Youngsters’ Community is important because:
It is important for people to understand how the disease affects others. It also shows that HAE is just a way that God makes some people unique.

My favorite quote is:
Be a pineapple; stand tall, wear a crown, and be sweet on the inside.

‘Creating a Path to Better Health’ means:
Accepting that HAE is a part of our lives and learning to deal with it in a positive way.

This is my personal story:
I had my first HAE attack when I was a freshman in high school. My eyes had both started to swell up like someone had beat me to a pulp. My stomach hurt so bad and my eyes were so swollen I could barely see. I had no idea why, and I was honestly really scared. I went to the ER and was actually diagnosed with Periorbital Cellulitis which is actually staff in the eye. I was put on antibiotics and sent on my way. The swelling went down in a week so we just assumed the antibiotics worked. A week after I got off the antibiotics the swelling came back again. We went to the doctor and got more antibiotics. The doctors had no idea what else it could have been. Well the swelling kept coming back and a doctor had finally ruled out Periorbital Cellulitis. I went to many different doctors and specialists to have my blood taken so many times. My arm was like a pin cushion. I was ashamed to go to school I hated looking like I had been beaten. I felt like everyone stared and judged. I remember calling my mom in tears when they started to swell, because I didn’t like looking in the mirror and seeing what I saw. It wasn’t until the middle of my sophomore year when an eye specialist finally diagnosed me with HAE. We found my only trigger to be stress. So my eyes were swelling almost shut, because of stress. I was a straight A student who played 2 sports and was in all kinds of clubs, I was always stressed! Although, since then I’ve learned to manage my stress. I’ve started to understand that my HAE is just one way that God made me unique. I am now finishing up my spring semester of my freshman year of college and I made it through the year with only 3 episodes of swollen eyes. That’s pretty good compared to almost every other week during high school. A crazy fact is that my best friend was actually diagnosed with HAE 2 years after me and we find that very ironic since it is kind of a rare disease. LOL

#togetherapart – meet us …