For people with HAE
As a chronic, debilitating, and disfiguring disease,
HAE impacts the
lives of people affected by it.1,11
Emotional
- A near-constant anxiety about their next attack causes people with HAE to cancel plans1,6,19
- Embarrassment and feelings of shame in front of friends and strangers20
Not a person with HAE.
Jennifer’s HAE Story
Patient: Jennifer, age 26
First HAE attack: Age 12
Diagnosed with HAE: Age 16
Attack history: 1-2 attacks per month in extremities or abdomen
Work status: Currently working part time due to attack frequency and doctor appointments
HAE family history: Father and grandmother
Treatment history: On oral preventive therapy; still experiencing breakthrough attacks and must self-administer on-demand injections
Treatment history: On oral preventive therapy; still experiencing breakthrough attacks and must self-administer on-demand injections
The threat of an HAE attack is always hanging over me. I worried about getting a sudden swell all through high school and college, and now that I’m working, it’s an even bigger problem.
An attack means I can’t do my job. My boss just doesn’t understand what I’m going through, and my co-workers see me as unproductive. Although I try to explain, they just don’t understand what it’s like to have HAE.
I take a pill every day to help prevent attacks, but it doesn’t always work. If I’m really stressed, my hand or face swells up, and I have to step away to find a bathroom where I can give myself an injection in private. And that makes me even more stressed out.
Is HAE always going to control my life?
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References
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