Putting our family’s knowledge of angioedema symptoms to use

Over the past eight years, my immediate family has received four angioedema diagnoses. First was my eldest daughter, Aria, who was diagnosed with allergic angioedema in 2018. Then came my adopted daughter, Leah, the following year, who has type 2 hereditary angioedema (HAE). I received a type 3 diagnosis, with normal C1 inhibitor levels, in 2023. Last year my oldest son, Dorian, was diagnosed with HAE type 1.

Aria, fortunately, doesn’t have to use maintenance or rescue medication. The other three of us take Orladeyo (berotralstat).

Leah had the most difficult time finding reliable rescue medication as she had severe reactions to all but one HAE treatment before oral medications became available. Thus, we’ve learned a great deal about the types of angioedema, the variety of possible symptoms, the severity of attacks, and the ways to treat them.

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HAE is only one of Leah’s rare diseases. Others include a connective tissue disorder, an autoimmune disorder, idiopathic intracranial hypertension without papilledema, and the ultrarare familial cold autoinflammatory syndrome type 2. All of them cause headaches.

Leah had a new symptom crop up this year. She had severe stomach pain that was different from any abdominal symptoms she’d experienced before. We tried all the typical home remedies as well as various pain medications, but the pain continued to worsen, and she requested we take her to the emergency room. While there, she was diagnosed with an abdominal migraine and given an IV cocktail, after which she quickly recovered.

On alert for symptoms

But the plot twist came while we were in triage. As we sat waiting for the completion of her saline bolus and for her to be discharged, we overheard an interesting conversation through a curtain. Someone was was describing the unexplained symptoms of a family member. We thought the description sounded like an HAE attack.

The three of us — Leah, her dad, and I — began discussing whether we should say something, either to the person talking or the doctor. We didn’t want to sound holier than thou or like a know-it-all; we just thought we could help.

After a few minutes, the person’s doctor, who was also Leah’s doctor, brought us release forms to sign. Leah, being the boldest among us about these issues, explained our family’s diagnoses and what we’d overheard. She shared with the doctor her concerns and suggested blood work to check the person’s C1 levels, which can be used diagnostically for HAE.

I was so proud of her for putting herself out there, standing up, and saying something to help! As we were preparing to leave, we heard the doctor requesting that a nurse put in the suggested order for blood work.

We’ll never know the outcome of her actions, but Leah may have had a lifesaving impact on a stranger. I think she chose wisely. She’s an amazing patient advocate!

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.