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Watch these helpful videos to hear stories from people with hereditary angioedema (HAE) and learn from their personal experiences.

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HAE and sisterhood

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My sister is three years older, and she had very similar symptoms as I did. Um, and so she, before I did, she went through the gauntlet of medical tests. And they told her she had bad menstrual cramps and irritable bowel syndrome, which is the same thing they ended up telling me I had. So my sister and I have really similar symptoms, we called it our ‘stomach sickness’ and, uh, you know we both, I think, felt crazy going to doctors being told we had, you know, these minor things so we really understood each other when nobody else did. So I actually had to have emergency surgery. Uh, the doctors thought I had cancer and they removed a portion of my intestines, and that was unfortunate, but that was really the impetus to lead to different medical care. And it was actually my sister who first got diagnosed through a GI doctor after my surgery. As soon as my sister left the doctor’s office, she called me. It was very early in the morning, and she said “Liz, I know what we have.” You would think the diagnosis would mean the most to my sister and I, but the person it meant the most to was my mother ’cause she was the one who took care of us through our suffering for all those years.

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