Often, when I talk with newly diagnosed hereditary angioedema (HAE) patients, they have many questions. Sometimes they’re looking for validation, answers about their disease and attacks, or just another person to talk to on a similar journey. Having had HAE for a while now, I hope my advice and experiences can provide people with a sense of support.
For a long time, I wasn’t very open to talking about my hereditary angioedema (HAE). I didn’t want anyone to wonder what was wrong with me or treat me differently. I felt like I had no one to talk to who could possibly understand what I was feeling both physically and emotionally. Plus, I didn’t really understand how HAE could affect me. I felt very alone. But I soon realized that, by spreading awareness, I could help not only myself and my family but the larger HAE community.
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.
My journey to a hereditary angioedema (HAE) diagnosis was filled with many ups and many downs. Like a rollercoaster, there were frightening twists and turns, and many forces I had no control over. But no matter what, I tried to stay calm and keep moving forward, even when a trip to a hospital for help nearly broke my resolve and caused me to lose hope.
I was 50 years old before I reached diagnosis, and it was a long road during which I felt tethered in place in a world of black and white. But in many ways, feeling tethered for so long made me appreciate getting a diagnosis so much more.