Angioedema isn’t always what you or even your doctors expect

Last updated July 25, 2025, by Natalie Sirota

 

My home is an exhibition hall of angioedema manifestations. Four family members — including myself — have four different types of the condition, from hereditary angioedema (HAE) to allergic angioedema. And each of us has a unique mix of symptoms.

It’s often said, “If you’ve met one person with HAE, you’ve met only one person with HAE.”

Sadly, most general practitioners were trained in medical school to not look beyond the main presenting symptom. Many times, this results in patients with angioedema not being taken seriously by their doctors.

But early diagnosis and treatment not only lead to enhanced management of angioedema. They also can potentially prevent a life-threatening event. And help prevent emergency intervention and costly medical treatments.

The more aware patients, caregivers, and healthcare professionals are of the many ways angioedema can reveal itself, the sooner we can get more accurate diagnoses.

Internal swelling

The first family member to be diagnosed was my adopted daughter Leah, who has HAE type 2. The first indication was a cascade of symptoms: nonstop headache, followed by exhaustion, rashes, gastrointestinal issues, and vascular inflammation.

The most terrifying symptom of all was throat swelling. This is one of the most dangerous HAE reactions due to the possibility of airway blockage and total asphyxiation.

External swelling

My firstborn daughter Aria was diagnosed as an adult with allergic angioedema following an emergency room visit after she had a reaction at work that caused extreme swelling of her mouth and lips.

When she was a baby, we had witnessed facial swelling and her eyes puffing up after being exposed to freshly mown grass. But once she was indoors with air conditioning, everything returned to normal. To my knowledge, she never had any other attacks until adulthood.

I was extremely confused when learning of Aria’s diagnosis, because it varied dramatically from what Leah had experienced. How could both be angioedema?

I began to do further research and educate myself. And I learned that there were many manifestations of angioedema, including criteria that I had experienced.

Swelling mistaken for other diagnoses

Amid that learning experience, I began discussions with our immunologist about my abdominal distension and general feelings of bloating and pain. It seemed related to my irritable bowel syndrome, but I also experienced occasional vaginal swelling and discomfort.

It wasn’t until sharing before and after pictures of my stomach swells that the doctor began to take notice. He did the usual testing, but my levels of C1 esterase, a protein found in the blood, were always normal, ruling out HAE type 1.

He tried other treatments before finally considering HAE following a particular foot swell. The deciding factor came after a trial of medication.

Within minutes of my first treatment in the office, I felt like my entire body was deflating. With that, I received a diagnosis of HAE type 3, or HAE with normal C1 levels.

Unilateral swelling

My oldest son Dorian was diagnosed with yet another form of HAE. He always had a rather overwhelming reaction to insect bites, as did I. These bites would swell up enormously, to the size of a teacup at times. Also, like me, his ankles and feet swell, especially when traveling.

There was one occasion when only one side of his face swelled, but so much so that it looked as if he had a unilateral case of mumps.

We consulted our immunologist and shared documentation. With testing, we found that Dorian has the more classic form of hereditary angioedema, type 1.

Medication-induced swelling

Today, there are many forms of treatment for HAE. Back when Leah was diagnosed, there were no oral medications approved for the condition. She was initially prescribed an intravenous medication, which we were trained to administer at home.

Following insurance challenges, she had to undergo several trials of other HAE medications, many of which caused adverse effects or even worsened her symptoms.  There were still other treatments that she could not even try because she had experienced reactions to other HAE medicines.

Other drug-related swelling can and has also occurred. Due to Leah’s multiple diagnoses and chronic daily intractable migraine, she has used many over the counter and prescription medications, some of which have caused a flare of her HAE.

Rashes aren’t swelling

Rashes are also very common with HAE and other types of angioedema. Such skin irritations, however, are often easily dismissed by parents, teachers, caregivers, and medical professionals.

So many things can cause a rash: foods, chemicals, environmental exposures, childhood diseases, medications, and even stress. It can be especially difficult for anyone, even doctors, to see a rash and diagnose the source.

If you or someone you care about has symptoms that just might be hereditary angioedema, share this article with your healthcare providers to help them see beyond the textbook.

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