Hereditary Angioedema (HAE) has always been part of my life. I watched my mother and brother manage their HAE diagnoses for years, but at the age of 16, HAE became personal.
In my early childhood, around age nine, I remember my mother suffering with severe HAE attacks with no medical treatment options. She often wasn’t able to be present in the daily life of our family and missed many events. I remember one time she spent all day cooking Thanksgiving dinner, then started feeling sick and had to miss dinner. We also had to cancel my birthday party one year because she had an HAE attack, and I didn’t want to have it without her. It upset me that she couldn’t always be present, but as a family we had to remain flexible. That became our “normal.”
For most of my childhood, I had never had an HAE attack, so my mother hoped I would escape the diagnosis, but at the age of 13, I was tested out of an abundance of caution. The results showed that I did in fact have HAE. I was shocked when I received my diagnosis because unlike my mother and brother who had their first attacks at early ages, I was 14 and had never had an attack. I thought I was in the clear.
Even though I had been formally diagnosed with HAE, I had yet to experience my first attack. Three years later, at age 16, that all changed. I had been at a friend’s house for a sleepover and my mom picked me up. On the way home, I remember feeling a terrible cramping in my stomach and she had to pull over because I got sick. This first attack happened in my intestines, and at that point, we knew we would have to start treating me as an HAE patient. Since then, I have experienced attacks in my back, usually caused by physical stress. I quickly learned I would have to stay on top of my medication and manage my HAE so I could continue participating in the activities that I loved, like my musical theater performances.
Ever since I was a young child, I loved to sing and perform, even if it was just in my living room. I wasn’t always good, but it brought me happiness. It was at this time I began to recognize how different I was from the other kids growing up around me in southern Georgia. I started participating in choir and musical theater and joined the competitive theater group at my high school, often performing in as many as six shows a year. There were a few instances when I had to perform through breakthrough HAE attacks, running off stage to administer medicine, and then keep going. There were no understudies to take my place, so I had to go on. Staying on top of my preventative medication made that possible.
In the theater, I was able to find a community for myself and at the age of 16, I came out as gay, first to my parents, then to a few friends, and then I posted a video on YouTube. I shared my truth for myself. Owning my identity gave me power and the ability to stand up for myself.
Another place where I found community was the Hereditary Angioedema Association’s (HAEA) Youth Leadership Council (YLC). YLC gave me an opportunity to stand up for HAE patients and my community. I had attended several HAEA Summits with my mother as a child before I was diagnosed. When I joined YLC at the age of 15, I hadn’t experienced an HAE attack yet, but a year later when I did, I knew I could reach out to the other members of the YLC for support. The HAEA YLC was instrumental in my experience of growing up with HAE. I never had to question if I had someone in my life that could understand what I was going through. Being a part of HAEA allowed me to immediately bond over shared experiences with others who are living with HAE.
Through the HAEA, I was able to participate in Capitol Hill Day. This opportunity came at a time when I was already just starting to participate in politics, attend protests, and pay attention to to things that may impact me as a both a Black and queer person. Speaking to my political representatives and trying to enact change was a really fulfilling and exciting experience for me. I think it is our duty as citizens to participate in politics and more importantly stand up for ourselves and the things that may affect our communities, both within HAEA and broader. The HAEA gave me an opportunity to be part of that change.
When I was diagnosed, I was lucky to already know about the HAEA as a resource. I had been immersed in the organization with my mother since I was young, but that isn’t always the case for other HAE patients and families. Because HAE impacts people of all genders, races, and ethnicities, it is important to see that representation. Marginalized communities have historically struggled to get accurate health information and be represented in clinical trials. It is so important to have trustworthy organizations, like the HAEA, that patients can rely on for factual and helpful information they can share with their doctors. I think it’s important for everyone to know that HAEA is an organization for everyone, regardless of race or class. It is so important that we level the playing field and knowledge and access can accomplish that.
