The Caregiver Journey: How I Ran for a Change

January 1st 2023 | 5 minute read
Ava Porter
Hereditary Angioedema (HAE) was introduced into my family’s lives when my younger sister, Lillian, was diagnosed at three years old. Lillian’s diagnosis process was long and difficult as she went through many emergency room visits and hospital stays.

Over the course of finding a diagnosis for my sister, I felt like there wasn’t much I could do to help her besides always letting her know that I was there for her. I would accompany her to her doctor visits, and play games or watch movies with her in the hospital to keep her mind off things.

After Lillian was diagnosed, my family and I began participating in the HAEA Summits. At our first summit, my sister was able to meet other young patients who had HAE, and I was able to meet other kids who had a family member with HAE. The summits really showed my family that there were other people who could relate to our families experiences, and that my sister was not alone.
A short time later, I decided to spread HAE awareness and fundraise for the HAEA on my own. My mom and I came up with the idea to create a fundraiser called “Ava’s Run Towards A Cure.” When I was eight, I ran in a local 5K to raise support and awareness for HAE in hopes of finding a cure. This was the first time I really felt like I was making a difference in not only my sister's life, but also for other HAE patients as well. Running was something that I always loved to do, so I was very grateful to be able to use something that I loved to work towards making a difference.
Once I found that it was possible for me to make a difference, I found many other ways to help my sister. My family and I started to attend the HAE IN-MOTION® 5k’s where we were able to connect with other families in our area. The 5k’s were always something I looked forward to, not only because of the running aspect, but also because we could raise awareness for HAE with other members of our community. My family and I would even travel to different states where our relatives lived so that we could create teams to run the 5k’s with. Creating a team for the race was always super fun, and I believe it educated a lot of my family members and friends about HAE and what they could do to spread awareness.

I found that the more I participated in events, the more I was able to strengthen my advocacy and awareness skills. One of my favorite ways to advocate for HAE is on Capitol Hill during the HAEA Capitol Hill Days. The Capitol Hill event provides me with the opportunity to speak with important members of congress regarding important topics within the HAE and rare disease communities. Speaking with such influential individuals is really empowering and it allowed me to further my education about the topics surrounding HAE. I found that it is important to speak to our elected leaders about things like the importance of access to necessary medications, as well as funding for research.

Through the HAEA, I have been able to strengthen my advocacy skills in order to make a difference in the HAE community. The HAEA has shown me that you do not have to have HAE to make a difference, and that anyone is capable of being a part of positive change. Something I want to tell other caregivers is to advocate! Advocating and educating others about HAE is extremely important and is necessary to spread awareness about HAE. Even simply telling someone new about HAE can make such a difference!
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