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Diagnosed with
HAE in 1997

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HAE and community

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I remember the first time I met someone else who was not in my family who had HAE. I got this odd sense of relief, because it was just nice to know that there were other people in the world who were like me, but weren’t related to me. (laughs) Because, I don’t know, it was just I felt like our family was this isolated family who had an illness, and it was just us. It was life-changing to meet other people with HAE because I know my family, I know our experiences. It was nice to get to meet other people and hear theirs and hear their perspective and what life, how they manage life, um, with HAE. It was just different.