Natalie Sirota: Explaining hereditary angioedema and its triggers
Natalie Sirota has hereditary angioedema (HAE) and also has two children with it. She describes the way she explains HAE to people who don’t have any prior knowledge of the disease.
Transcript
I have tried to explain HAE reactions to family members, and in the simplest form, I describe it as a multi-chemical process that ultimately leads to inflammation — kind of like a domino effect.
The initial triggers for people with HAE can vary from person to person. In my experience, it is usually stress, food, fatigue, and sometimes vibrations that can cause the initial trigger.
For instance, just moving with the vibration of transportation for a while can cause a trigger for me.
Also being stressed, whether mental or physical stress. If I work in the yard a little bit too long, I’m like, “OK, now I’m experiencing a swell.”
If I’m really stressed about one of my children or their medical issues, I can find that I’ll wake up the next morning with swelling. I have a lot of food triggers, which has been a trial and error for me.
I’ll eat something, and sometimes it will just immediately cause a swell. Sometimes it’ll be an hour or two, and I go, “Oh my, it must’ve been something I ate.” Then I have to evaluate what that was — what part of what that was that might have triggered me. And it’s been a long process learning the things that do and don’t trigger me.
Two of my children have also been diagnosed with HAE, and their triggers are different than my triggers. So it really is a learning process.
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