Natalie Sirota shares how stress, vibration, and even home construction helped her identify unexpected hereditary angioedema triggers through lived experience and community connection. Read her column, Dancing with Rare Disease.
Transcript
Hi, I’m Natalie Sirota. I live in Colorado, and I have hereditary angioedema.
Over the years, I’ve identified two major triggers for me and my hereditary angioedema as stress and vibration.
Vibration, meaning if I am in a car for a while, or on an airplane, or exposed to any mechanical noises or vibrations.
Identifying new triggers is somewhat difficult. Unfortunately, the way that I’ve identified new triggers is by having an HAE attack and going, “Oh my gosh, what caused that?” And having to unpack what, in the past 24 hours, might have led up to that.
I recently wrote a column about finding a new trigger. We had some home renovations being done, and on one particular day, they were using some sort of mechanical device that we could hear a very high-pitched sound, which was incredibly annoying, but obviously, there was some unknown vibration that was happening as well.
And, at that time, there were three of us in the home that live with hereditary angioedema. And so I was noticing lower back pain and incredible fatigue and just general malaise. Although I hadn’t been doing a lot that day, I hadn’t been stressing my body at all. So I thought it was interesting and unusual, the lower back pain. I’ve had back pain, but this was very specific lower back pain.
And my daughter came to me, who also has HAE, and she had a higher headache. She has migraines. So her headache had spiked, as well, and she said, “I’m experiencing this lower back pain. I don’t know what’s going on.”
And when my son, who works outside the home, got home from work the following day, he was like, “I just had so much lower back pain today. I don’t understand what’s going on.”
And we all looked at each other and went, “This is weird that we’re all having this lower back pain.”
And I said, “I wonder if it was that sound coming from the machine that the workers were using.”
I never would have thought that it would have come from construction that I had been exposed to. It was very, very strange.
For me, one of the best approaches to learning about new triggers and my personal life with HAE is talking with other people. Not only my health care professional and team, but personal education, and talking to other people in the community.
Recently, I went to an informational dinner where a doctor was talking about HAE. And after the dinner, several of the patients there that were present were talking amongst themselves and saying, “Well, what are your triggers?”
And so I found out about other triggers that other people have. I haven’t experienced them yet, but there can always be new triggers and new symptoms.
So just learning all the symptoms, not just your symptoms, but all of the symptoms of HAE, is really crucial to know because it could crop up at any time. And I didn’t know that until talking with other patients.
