As far as I was concerned, my life was completely perfect until my first attack shattered my carefree childhood at the age of 12 [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]. Overnight, I went from being healthy and active to debilitated, scared and shattered. I was having abdominal attacks with severe pain weekly, sometimes even daily. I was so afraid I was going to die. My parents immediately began taking me to various specialists, trying to find an answer. Life quickly became a blur of sterile doctors’ offices and unbelieving faces. I saw numerous gastroenterologists and gynecologists, but I was a medical mystery to them all. Were my symptoms legitimate or all in my head? Were my cries for help really just cries for attention? At times, the sheer hopelessness was as devastating as the agonizing pain I was enduring.
As my symptoms worsened, I found myself subjected to numerous surgeries. Each procedure left me in an attack without relief and brought me no closer to a correct diagnosis. The colonoscopies and laparoscopies were invasive and inconclusive. Heartbroken and frustrated, I decided to give up at the age of 18, exhausted and broken by my six-year journey. Yet, my parents refused to give up hope. They were my strength when I had nothing left. My greatest advocates, they kept my spirits up and never wavered in their support. I promised my mother I would see one final doctor, a young gastroenterologist fresh out of medical school. He truly listened to me and pored over all of my notes. He ordered a blood test to check for HAE, and sure enough, the second time I saw him, he had the news I had been dreaming of—a diagnosis. I have hereditary angioedema.
Today, I am happily managing my HAE. As excruciating as the six-year journey was, I am so grateful that I never stopped searching for the proper diagnosis. There is always hope, and I encourage you all to keep fighting and never quit until you find the right healthcare partner for you who will help you find YOUR diagnosis.