Educating others is as much a part of me as hereditary angioedema (HAE) or my eye color. Whether as a nurse, a mother, or a person with HAE, educating others has always brought me joy and a deeper understanding of myself.
Day by Day
Like unwelcome, unpleasant party guests, I noticed that hereditary angioedema (HAE) attacks have a tendency to arrive when you least expect them. They don’t care if I’m at work, school, on vacation, or enjoying a fabulous night on the town—HAE can crash any get-together. It would be easy to let the fear of an episode prevent me from going about my life, but I don’t let it! I just started wearing clothing that makes me feel comfortable and confident!
There were moments in my hereditary angioedema (HAE) journey that I felt entirely alone. Sometimes, it seemed that I was the only person on the planet experiencing strange symptoms and indescribable pain. Even with my wonderful family at my side, there were times when I felt completely isolated . As hard as they tried, it was difficult for them to fully understand my struggle. The physical pain of HAE took a tremendous toll on me, but equally problematic was the emotional burden of feeling alone and misunderstood.
For me, keeping the romance alive can be a challenge. It requires work and effort from both my husband and myself. Sometimes, there are outside forces hindering or halting romance, whether it’s work, kids, health issues, or anything in between. For someone like me, who is diagnosed with hereditary angioedema (HAE), my chronic disease can add another trial to the situation.
When my husband, David, decided to try FIRAZYR® (icatibant injection), a medicine used to treat acute hereditary angioedema (HAE) attacks in adults 18 years of age and older, we weren’t just concerned about the injections. We also worried about the cost of the medication and if our insurance would cover it. But with the helpful guidance of OnePath®, Shire’s product support service for eligible patients, we were able to navigate our way down the insurance road.