When I first learned of my husband, David’s, HAE, I spent a good amount of time educating myself about the disease in hopes that knowledge would compensate for my lack of experience. However, I eventually realized that I could not control the condition. I felt powerless, and most certainly fell into denial.
For a while, my husband’s goal was just to get through each HAE attack and survive the pain, while mine was to find answers. Unlike David, I was not willing to accept that life had to be this way. It wasn’t until we brought two children into the world that we both developed a sense of urgency to get a handle on David’s health. One evening, I stumbled across an internet website for The Hereditary Angioedema Association and learned of a conference where we could meet medical professionals and other individuals with HAE. I knew, right then, there was nothing stopping us now! We were attending that conference! There, we met an HAE-treating physician, who I made an appointment with upon returning home. He became a great source of information for us and kept us up to date on treatment options. Through him, we heard about FIRAZYR® (icatibant injection), a medicine used to treat acute HAE attacks in adults 18 years of age and older, which has worked for David.
Remember, laryngeal attacks can become life threatening. If you have an HAE attack of the throat (laryngeal attack), inject FIRAZYR as directed and then go to the nearest hospital emergency room right away.
We have come a long way on our journey together, but with the help of our family, friends, and healthcare team, I’m slowly coming to terms with David’s HAE and my lack of control over it. I know now that I can only do my best in helping David with his HAE - and that’s okay! Together, David and I monitor and log his HAE attacks. We network with other patients, caregivers, and physicians. We do our best to spread awareness to others regarding this rare disease. And most importantly, we treat every attack at its onset.
FIRAZYR is an injection you can give yourself just under the skin of your abdomen, as soon as you recognize symptoms of an acute HAE attack, after you have been trained by a healthcare professional.
How did you come to terms with HAE in your life? Leave a comment below!
Learn about HAE at an event near you. Click here for more information.