#togetherapart: Meet Kyleigh

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 Kyleigh

I’m 18 years old

I’m a HAE patient

And I live in United States

I hope that HAE patients in the future:
find a friend that will listen to and relate to their struggles.

The HAEi Youngsters’ Community is important because:
our world is filled with fake ideas of perfection and having a community that shares the good, the bad and the ugly helps us take a moment to stop and love one another.

My favorite quote is:
“If you’re in a dark place today that’s okay. Even if you can’t get out of bed and all you can do is breathe. Take all the time you need. We’ll be here when you’re ready. Every day is a battle. Some days you’ll demolish everything in your path. Others you’ll hold on for dear life. Either way you are a warrior. Never forget that.” -Unknown

‘Creating a Path to Better Health’ means:
Giving patients access to more information, doctors having a better understanding of HAE, having medication available to every patient, and a community full of support.

This is my personal story:

My experience with HAE began when I had a lip swell that was diagnosed as a peanut allergy. I sat alone during lunch to avoid peanuts and gave up everything with a trace of peanuts, yet after cutting all of this out I was still experiencing swells.

I was back at square one and after many appointments and tests, I was tested for HAE. The test results came back positive and I was fighting against something I barely understood. Knowing that this disease could potentially end my life, I was in constant fear of any possible triggers.

I heard horror stories and felt threatened everywhere I went. Most of my family members and friends don’t know the true severity of HAE and make jokes about it, other people doubt I even have the disease. Nobody fully understands HAE so this makes it hard to give support through this journey, which I don’t blame them for.

I get my swells at random times that happen to be very inconvenient. Personally, I get very frustrated when I do not have control over something in my life and HAE took control away from me and put it into the hands of doctors and my parents who did not support preventative medication and saw them as a far too aggressive approach despite my desire to heal.

I struggled with trying to stay strong and collected for everyone else and just sat powerlessly and allowed HAE and everyone else to control my life.

After a few rough years, my doctors finally approved a self administered injection. I was so excited to finally be in control but when I told my friends about my new shot they began to make jokes and I felt alone and insecure. After hearing enough about my shot from my friends, I was over it. I was not open about my swells and did not tell people about the pain I was going through.

Eventually I had enough of feeling terrible all the time and having frequent swells. I realized that controlling my swells with medication was the only thing that was going to allow me to live a normal life. Today, I have taken back control of my life by making sure that I take my medication regularly.

#togetherapart – meet us …