Hello, and welcome. There have been several nights throughout my life when I was certain HAE wouldn’t allow me to see another dawn. But, through all the ups and downs, I’ve come to realize that HAE is a rare opportunity.
I started having my attacks 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 in children under 18 years of age]. Back then, a lot of times, the attacks I was experiencing seemed funny. (What boy doesn’t feel the need to show everyone his hand when it’s twice the size of his head?) But as I grew older, my attacks became harder to deal with.
Take one day in November 2007: I’d accidentally been hit in the eye and decided to ice it. The cold triggered an HAE attack, and my wife ended up driving me to the emergency room. Scared to death, she watched as the swelling progressed down my face and into my throat. It moved so fast that I was intubated without anesthesia. Then, the doctors decided to place me in a medically induced coma to help my body rest; I was out for three days. The doctors and nurses said they had never seen anything like it, and they stayed by my side. That’s one of the gifts of my HAE: it offers healthcare professionals the opportunity to work with a rare condition and learn more about it.
That attack seemed like the scariest thing ever, but there were more tests in store. My son would eventually ask, while my wife and I were driving him to my mother’s house so I could go to the hospital yet again, “Daddy, why is it that some days you can be so much fun and other days you can be sick like this?” I had to stop the car. More than anything, I wanted to give him a hug and tell him how much I loved him.
There have definitely been times when I felt as if HAE controlled my family, my goals and my dreams. But, over time, I have learned to be more active in my health. And, because of HAE, I’ve met some wonderful people, strengthened my relationships with God and my family, and become very involved with medical studies in an effort to help other patients. Having HAE has taught me to appreciate every opportunity I have to love my children, to hug them and be hugged by them, to make them laugh and to delight in their laughter. If I didn’t have HAE as the backdrop of my life, I don’t know that I'd have the same outlook.