Natalie Sirota has hereditary angioedema (HAE) and also has two children with it. She shares about how understanding the science of HAE has improved her family’s quality of life.

For me, having a better scientific understanding of the disease has helped me lower my anxiety as well as feel more comfortable that my body is trying to help me. I do have medication that I can use that’s gonna help either with an immediate attack or something I can use over time that will lower possible attacks.

This was a very crucial part when my adopted daughter, who is the first in our family that was diagnosed with HAE, began showing symptoms. She had been very ill for many years, and we had been informed of a cytokine storm long before it became part of the vernacular in 2020.

But we still didn’t know that it was caused by HAE. It was really scary. One of her symptoms is that her throat closes up, which can possibly cut off her airway. And we would go to the ER, and they didn’t know what was happening. And it was really terrifying not knowing what was going on with her, and we couldn’t do anything to help. The doctors didn’t seem to know how to help, and it was really terrifying.

Finally, one immunologist suggested that it might be hereditary angioedema. He tested for that, he put her on a trial of medication, and it all finally seemed to be the answer.

And so I was still very scared because — “Oh my gosh, when do I know if she’s gonna have an attack? What are the triggers going to be?”

And that was — learning and doing my own education, not only finding out from the immunologist but doing my own personal education, was very helpful in understanding the processes, what was happening, and that there were triggers.

And, again, over time, finding out what her triggers were to help mitigate the reactions.