Receiving the diagnosis of HAE as an adult was the most pivotal, joyous, and hopeful moment of my life. Not only did my agonizing journey for answers finally come to an end, but a new chapter of my life began with the referral to an immunologist I see today. He has an interest in HAE, and I was struck by his concern for my well-being. He is knowledgeable about the disease, educates himself and relates potential treatment options to me. He and his team of nurses work to provide the best possible care. To this day, if I have a severe attack, someone is there for me. With the support of my doctor and his team, I feel empowered to determine options that work best for me.
From the very beginning, my relationship with my doctor was built on open and honest communication. He listens to what I say, and is open to all of my ideas. We constantly discuss my therapeutic goals, and make decisions based upon them. Working together, we discussed adding an option for treating acute HAE attacks, and he told me about FIRAZYR® (icatibant injection), a medicine used to treat acute attacks of HAE in adults 18 years of age and older. My doctor said FIRAZYR was a self-injection that I would be able to do only after I was trained by a medical professional. He also said that the medicine came in portable, pre-filled syringes that I would be able to keep with me at home and carry in my purse. Together, we went over FIRAZYR’s risks and benefits. He made sure I knew that if I had a laryngeal attack, I needed to seek immediate emergency medical attention at the nearest hospital after injecting with FIRAZYR. He also explained that the most common side effects were injection-site reactions, such as redness and itching, but that everyone reacts differently to treatments and that I may experience other side effects, too.
And after being thoroughly trained by a nurse, I am able to inject myself with FIRAZYR when I realize an attack is starting. I do experience some swelling and redness at the injection site, but I work with my doctor to manage it. I am glad that I’ve had the opportunity to share my experience with HAE as a Shire Ambassador and meet so many wonderful people who are also on this HAE journey. Having a plan in place with my doctor makes me feel like I am managing my HAE the best that I can. I am thankful I never stopped working with my doctor to find a treatment that was right for me.