I’ve always enjoyed traveling, but living with HAE hasn’t always made travel easy.
Many years ago, I traveled 1,200 miles away from home in order to go to the beach with my wife. On our drive back, I was struck down with an abdominal HAE attack. The unbearable pain forced us to find a hotel, where I laid curled up in a ball for three days, waiting for the attack to subside.
Back then, I had about five or six attacks per year, so I never thought about the possible risks I was taking, traveling so far from home without a plan. But after that incident, the fear of having another attack while I was away from the support I was used to became overwhelming. I let that fear invade my life, and I refused to travel very far outside my comfort zone.
Today, there are acute treatment options like FIRAZYR® (icatibant injection), a medicine used to treat acute attacks of HAE in adults 18 years of age and older. My doctor said I could administer FIRAZYR myself, after I was trained by a healthcare professional, and that step-by-step instructions come with each package so I can review them as often as I need. He also said that the medicine came in portable, pre-filled syringes. Because of this, I know that I can inject myself with FIRAZYR whether I’m at home or on the road. Together, we went over FIRAZYR’s risks and benefits. He made sure I knew that if I have an acute HAE attack that causes swelling at my throat that I should still right away go to the nearest hospital emergency room after giving myself a FIRAZYR injection as directed. My doctor also discussed injection-site reactions with me, because they’re common, and how to manage them if they occurred. For example, I have had a burning sensation and sometimes bruising where I’ve injected. It’s important for people to talk with their doctor about potential side effects and to get answers to any questions they may have.
By working with my healthcare team to develop the treatment plan that’s right for me, I feel like I’m taking steps that help me manage my life with HAE. And, last summer, I once again traveled away from home. During that trip, I did end up having an attack…but I didn’t let it ruin my trip. I checked in with my doctor, immediately relating my symptoms, and, after discussing the situation with him, was able to treat myself. Eventually, my symptoms resolved. Then, I was able to continue on my journey.
All those nights lying around, curled up in a ball, crying in pain during an attack, have led me to appreciate my life—and to take advantage of the opportunities it presents. That’s why it’s important for me to not let a diagnosis of HAE interfere with me doing many of the things I want to do. I have a treatment plan I feel comfortable with—but everyone’s experiences are different, and what works for me may not work for you. I encourage everyone living with HAE to work with their doctor to find a treatment plan that works for them.
To continue to find out more about other people and their experiences with HAE, be sure to check for Shire Ambassador events in your area.