Building Hope by Advocating for HAE

Advocacy is an important aspect of raising awareness for Hereditary Angioedema (HAE). Courtney, a young individual with HAE, describes her experience at the HAEA's Capitol Hill Day, and how her voice was able to not only impact those on Capitol Hill, but also bring about change to HAE community members.

Almost instantly as my plane landed in Washington D.C., I felt overwhelmed with excitement as I realized Capitol Hill Day had finally arrived. My thoughts bounced rapidly on the taxi ride to the hotel as I wondered what it would be like meeting with Congressional staff to advocate for individuals with Hereditary Angioedema (HAE), their caregivers, and other HAE community members. However, my excitement was overturned with fearful thoughts as I began to seriously consider how a young adult like me could possibly bring about a large-scale change. I felt insignificant as I focused intently on my youth, my limited knowledge of politics, and my inexperience with advocacy. However, these thoughts were only temporary. My doubts were quickly forgotten once I met with other HAEA Youth members at the event and began to better understand what it means to be an advocate.

By the next day, I felt ready to take on Capitol Hill as we traveled as a unified, well dressed group of advocates through our nation's capital to the Congressional offices. As we walked, I reflected on what advocacy meant. As I had learned the previous day, advocacy means passionately speaking up to support an issue that you are well-informed about, and preparing to explain why this topic is important. To be an advocate means to have a strong voice and to be willing to share your story to enhance one's understanding of why the topic of concern needs to be addressed. In this situation, I was on Capitol Hill to advocate for improvements in care for individuals living with Hereditary Angioedema (HAE), access to life-sustaining medications, and the continuous awareness and funding of HAE research. My passion for this topic is deep rooted, as my mother and I are both individuals with HAE who are well-informed about the science behind this condition, the chronic effects, and the unfortunate financial battle these individuals face when accessing their medications. With all this in my mind, I was eager to start advocating as we walked into the first Congressional office.

The day flew by as we went from one meeting to the next, educating the Congressional staff about our cause. It was a busy, fun-filled day that left me with a lot of feelings and thoughts. The best thought of them all was the feeling that I had made a change. I was part of a movement in which my personal story had made an impact. Opposing my early fears of insignificance, my experience being an Hereditary Angioedema advocate was not ignored due to my youth or my inexperience; but rather, I was heard, I was listened to, and I brought on change.

If I could emphasize one thing from my experience at Capitol Hill Day, it would be that no matter how young, old, introverted, extroverted, experienced, or inexperienced you are, you have the ability to be an advocate for what you believe in, those you care about, and for yourself. I will always appreciate this lesson learned at Capitol Hill Day and plan to set it as my life mission. I also learned that young HAE community members in the United States and around the globe are making the world aware of HAE. HAEA youth members are tough, passionate, engaged, and truly remarkable advocates ready to stir the world with change. I gained a great deal from my experience during Capitol Hill Day and I hope to see more advocates out supporting individuals with HAE, their caregivers, family members, and other community members affected by HAE.

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