Patient Stories Archive

Feb 2012: Royce's Story

My name is Royce and I was diagnosed with HAE type 1 in 1998. I suffered with misdiagnoses as do most HAE patients. As a child, I had frequent and massive swelling and it was always attributed to allergies or acute insect reactions. As I got older, the attacks got more severe, mimicking many different [...]

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Jan 2012: Chris's Story

My name is Chris. I am 27 years old. My first attack was when I was 12 yrs old and it was a stomach attack. It peaked while in church services at my catholic school. I woke up in the nurse’s office about an hour later still in crazy pain. I always knew my dad battled [...]

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Dec 2011: Debi's Story

My name is Debi and this is my HAE story. It was on a Sunday after Thanksgiving one year that my face swelled for the first time. I only noticed it when I went to the bathroom to wash my hands – I had no pain from the swelling. I barely made it to the [...]

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Nov 2011: Marsha's Story

My name is Marsha and, for me, living with HAE is like continually trying to build a house of cards. With great care and deliberation you tentatively put each card in place – you try different strategies and plans and every conceivable modification you can think of to keep things in balance, and then a [...]

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Nov 2011: Elaine's Story

My name is Elaine and I was diagnosed with HAE at the age of 3. I inherited HAE from my mother. I have traced her HAE back 7 generations and I know of 40 family members who have HAE. When my mom passed away from laryngeal edema while she was in the hospital, I made [...]

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Oct 2011: Rod's Story

“We probably will never know why you swell, but it’s called Angioneurotic Edema”. This is what I was told by a well-known allergist shortly after my first attack some 35 years ago when I was just 33 years old. I wasn’t necessarily happy with this diagnosis, but I also had never had the sense that [...]

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