How I Got Diagnosed With HAE

I went a whole 26 years without ever having a swelling attack. I was still well acquainted with the disease though, because both my mom and my brother had it. I had seen the horrible parts of this disease before I ever had to experience it which I suppose was a blessing.

The first subtle sign

So one night after taking a walk with my family, I was in my room filming a TikTok when I shifted positions in my chair and felt pain on the top of my foot. When I looked down, I could see the top of my foot was a bit puffy compared to normal. My brain did not immediately go to HAE because I'd gone 26 years without an attack, but it was a quiet thought in the back of my mind.

I didn’t remember hitting my foot on anything that would cause the swelling, but hey, you never know. So that night I went to bed like normal, thinking I would see how it was when I woke up in the morning.

Waking up to swelling

The next morning, I woke up and immediately knew. Not only had my one foot swollen so much to the point I could hardly walk on it, but my other foot had started to swell as well.

Of course, it was only 5 in the morning, so my doctor's office wasn’t open yet and although I was in pain, I didn't think it warranted an ER visit since a foot swell isn’t necessarily life threatening. So I waited until the office opened and called and explained what was going on. They got me in right away, thankfully.

Educating my doctor and getting a referral

I remember going in and telling her about my family history of HAE, and shocker, she hadn’t heard of HAE. She also had said she had never seen anything like this. So she did a little search to see that to get tested for that specifically, I needed to go to an allergist, which she wrote me a referral for. But she wanted to be on the safe side and also ordered me to do some other bloodwork to rule out some other things.

An anxious three month wait

So for the next three days, my feet were the size of balloons. I called the allergist, who couldn’t get me in for another three months of course. I did the bloodwork. Everything came back fine, except for my ANA, which was unrelated to HAE, but proved helpful later when other symptoms developed.

So I waited for my allergist appointment, anxiously. Everyone around me thought I was over reacting and it couldn’t be Hereditary Angioedema. But somehow deep down I knew. I remember the allergist telling me that it looked just like HAE, but it was a little odd how I had gone my whole life with no swells, especially having two healthy pregnancies with no issues.

The official HAE type 1 diagnosis

So he ordered the labs. And of course, they came back positive for Hereditary Angioedema Type 1. And thus my new normal began.

I know my diagnosis story is not the norm for people with Hereditary Angioedema. Most people wait years and years because of how rare it is and doctors not recognizing it. I am so grateful for my story and that I knew the signs and was able to get diagnosed quickly. The quicker the diagnosis, the sooner you can get the treatment you need.