Patient Stories

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• Patient Stories Archive

Latest Stories

• Feb Royce's Story
• Jan Chris's Story
• Dec Debi's Story
• Nov Marsha's Story
• Nov Elaine's Story
• More Stories

Patient Stories

Everyone who has HAE knows that its symptoms are astonishingly individual.  No two people (even within the same family) share the exact same triggers, severity of attacks or even journey to diagnosis. Every HAE story is unique and valuable.

The patient stories profiled here tell of struggles and triumphs. One may sound very familiar or reveal aspects of living with HAE that you have never encountered yourself. At least one story will be profiled each month and archived so that you can view them again at any time.

We invite you to read an engrossing HAE profile below and to learn how to submit your own Patient Story.

Latest Patient Story

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 [...]

Read Royce's story

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 [...]

Read Chris's story

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 [...]

Read Debi's story