Swelling that came and went
JA
JamesKDiagnosed
Hereditary Angioedema (HAE)·
My first major HAE attack happened when I was sixteen. My lip swelled up so much I could barely talk. A&E assumed it was an allergic reaction and gave me antihistamines, which did nothing. The swelling went down on its own after about two days.
Over the next few years, the pattern repeated — random swelling in my hands, face, sometimes my throat. Every time I'd go to hospital, they'd say allergy. I started keeping a food diary, avoiding new products, basically living in fear of the next episode. It was only when my dad mentioned that his sister used to have "the same thing" that a doctor finally tested my complement levels.
Getting diagnosed was a turning point, but honestly the hardest part was accepting that this would be lifelong. The attacks are less scary now that I have an emergency plan, but the unpredictability still gets to me sometimes. Anyone else find that the mental side of HAE is almost harder than the physical?