My Health Journey: Onset and Diagnosis

Angioedema swollen eye

I will never forget the morning that I woke up in my mom’s apartment with my eye swollen shut. We had no idea what was wrong, but assumed it came from a bug bite or other once off trigger. Only it wasn’t a once-off thing. The swelling episodes continued over the next few months, presenting on my mouth, eye, or joint areas (mainly wrists, elbows, knees, etc.). It was all quite traumatic for a 13 year old. We went to my pediatrician, who struggled to determine what was wrong with me. Eventually they sent me to the allergy specialist in the nearest city (an hour away), but once we arrived they decided not to test me after all. So it was back to the pediatrician, who declared I would grow out of it in about a year, and attempted to explain how my body may be allergic to itself (I now realize that he was trying to explain what an autoimmune disorder is, but of course all that I remembered at the time was how crazy that sounded).

I remember the swelling continuing throughout middle school, with especially bad flare-ups coming when my immune system was fighting off a cold or other illness. A particularly traumatizing field trip in 8th grade included hobbling around Seattle for 4 days with strep throat, a migraine, feet that were swollen like little sausages, and of course swelling on other parts of my body as well.

Safe to say I didn’t grow out of it within the year, as my doctor suggested. The good times continued through high school. Usually I would stay home from school if I had a flare up, but there were a few times that I decided I couldn’t miss school over something so “cosmetic,” so I showed up, only to be greeted by funny looks and the not-so-gentle “what happened to your face?!” Nothing like a little encouragement to help an adolescent’s self-esteem! I also gave up sports like volleyball and tennis, because no matter what I tried, my arms and hands would be ridiculously swollen by the end of practice from the hard contact with the ball and racquet.

We went through all of the triggers we could think of– including changing laundry soap and even trying soy milk at my grandmother’s insistence, but nothing seemed to help ease the intermittent swelling.

College brought a brief period of relief…stay tuned for the rest of the story!

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