Have you been diagnosed with hereditary angioedema (HAE)? Do you want to hear the experiences of someone who shares your rare disease and treats acute HAE attacks with FIRAZYR® (icatibant injection), a medicine used to treat acute hereditary angioedema (HAE) attacks in adults 18 years of age and older? Consider signing up for a You, Me, and HAE Mentor call.
When I think of the hurdles I've had to overcome as a person with hereditary angioedema (HAE), it seems the mental and emotional challenges loom larger than the physical ones. Don't get me wrong--I've endured enough painful attacks for a lifetime. However, HAE also undermined my sense of self, and that was my biggest hurdle to overcome.
For me, it took many years of misdiagnosis by well-meaning physicians to reach the correct diagnosis of hereditary angioedema (HAE.) When I finally received the HAE diagnosis, I wondered, Are you sure? What are the odds? HAE is rare. Looking back, my road to diagnosis and not having answers was emotionally as painful as the disease itself. If I had known then what I know now, I believe I could have spared myself a good deal of anguish.
For me, planning for a vacation is no simple task. Who knew that taking a simple day trip or vacation required so much planning and preparation? Surprisingly packing isn’t our biggest challenge. I’ve come to realize that traveling with someone who has hereditary angioedema (HAE) requires extra planning considerations on my part.
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.