I believe my swellings started somewhere in my mid to late teens, but they were so minor that I didn’t realize it was a problem until I was 27 years old. Over a decade or so, I experienced minor swelling in my lower lip, the balls of my feet, and my butt cheeks. I never paid much attention to them, until 2017, when I caught a cold that triggered my first huge attack and would eventually lead to a diagnosis of hereditary angioedema (HAE).
I had swelling in both of my hands, both feet, 5 or 6 spots on my right butt cheek, which turned into 1 huge swell, and my right knee. I went to a local doctor who prescribed me antibiotics for the cold and suggested I take an antihistamine every 8 hours for 5 days. The swellings went down after a couple of hours and I thought I was good but this was just the beginning.
I started experiencing large swellings several times a week, usually in my hands and feet. But after a few months, I started getting them frequently in my face and throat. I tried going to our family doctor but he also just recommended antihistamines. After several months, I realized the swellings would go away without antihistamines, so I quit using them and started doing my research.
I came across HAE and knew I needed to be tested for this, as it was the only thing I could find that was similar to what I was experiencing. I went back to our family doctor and told him I wanted my C1-inhibitor (C1-INH) levels checked. They came back normal, prompting my doctor to conclude there was nothing else he could do. He recommended I see a specialist.
Read more about how HAE is diagnosed
At the time, I had no health insurance and couldn’t afford a specialist. I went a few more months of just trying to deal with my symptoms until my tongue started swelling and I decide to go back to the first doctor I saw who recommended antihistamines. I explained what I had been experiencing and that my blood results were normal but I had read about HAE type 3. He agreed to look into my speculation and had me come back in a few days.
Due to the type of his practice, he also wasn’t able to help me much but he did give me hope that I wasn’t losing my mind. I tried a few other doctors that I could afford, but none of them took me very seriously.
I dealt with the swellings on my own for a couple more years until I woke up one night with swelling in my throat. I could still breathe fine but I finally went to the emergency room (ER) because I wanted to get ahead of any breathing problems. The doctors in the ER treated me for an allergic reaction and after an hour with no positive change, the doctor asked if I had ever heard of HAE. I explained I had been trying to get a diagnosis but my blood work is always normal. This doctor recommended I be treated for it and said if it works, then we know what you have.
Within 10 minutes of treatment, I could tell the swelling was going down. It took a couple of months but I was able to get insurance and finally start going to the specialist. It still took about 2 years and some very scary swellings before we were able to convince the insurance company that HAE was what I had and that I needed the appropriate medication.
My swellings have stopped coming as frequently, but now when I have an attack I have medication to treat myself with.