Hello everyone! It’s truly an honor to share my story with others battling HAE. I hope this blog encourages you to believe in yourself and keep searching for ways to steer your ship through the difficulties HAE sometimes creates.
My life with HAE has been like sailing through stormy seas. At times, it’s tremendously lonely navigating the dark waters of uncertainty, misunderstanding and helplessness. My father, who’s my hero and shares my passion for metaphors, has always encouraged me to use this sailing imagery. He’d reassure me that I could make it over each wave of pain. I simply had to be true to my course, stay strong, and keep moving forward.
Before I was diagnosed with HAE, it seemed like I was struggling in turbulent seas. My first attack came around sixth grade [Note that FIRAZYR® (icatibant injection) is only indicated for adults 18 years of age and older with HAE. It is not known if FIRAZYR is safe or effective for children under 18 years of age.] I went from having a life that I considered to be completely perfect, to having horrific attacks of abdominal pain. I remember curling up in a ball on the couch and being afraid I was going to die. It was six years before I was finally diagnosed.
I fought with everything I had to continue to sail my ship and maintain a normal life. But putting on a brave face was exhausting. I couldn’t even spend the night at a friend’s house for fear of an attack.
I’d seen so many doctors, I didn’t think anyone would be able to figure out what was wrong with me. As I carried my stack of notes and files to a new doctor’s office, I believed he’d never take the time to review them. To my surprise, he did. He was compassionate and understanding and he pored over my notes.
Incredibly, he called me that same day to tell me he’d ordered a blood draw to check for HAE. I ran to the computer to look up HAE; reading about the symptoms was like reading my biography. And, sure enough, the next time I walked into his office, he confirmed my HAE diagnosis. Finally, “it" had a name! My symptoms were real, and I’d never been crazy. My nightmare of not knowing what I had was over.
I was referred to a sweet, hilarious, and caring immunologist who is as passionate as I am about life. A physician experienced in HAE, he and his team work tirelessly for me. Now I have an experienced crew on my boat! I found a doctor who not only listens, but really understands HAE.
With the support of my family and "crew", I can do a better job of steering my ship. The seas still get stormy, but I want others with HAE to know that they are not alone. It’s crucial that we empower ourselves with information and never stop fighting—because you never know what will come in the next journey.