Sometimes I feel like an old pro when it comes to living with HAE. But, we know how unpredictable HAE can be, so I’ve still had a few surprises.
- The location of my attacks can change
I normally have HAE attacks in my abdomen, extremities, or throat. But I also know what it feels like to have other parts of my body swell due to an HAE attack. One day when I felt strange symptoms, including swelling, my wife rushed me to our local hospital. After the ER doctor could not come to any definitive answers, he treated me with my acute HAE medicine and my symptoms gradually resolved. I left the ER thinking there was nowhere on my body that was safe from HAE attacks, but I felt like I had won yet another fight with HAE.
- I need to be cautious of the calm after the storm
I’ve been surprised when I get an attack after a crazy time, and not during. Many times I find myself, adrenaline rushing, not seeing an end to a stressful situation, and I find myself attack free. Attack free, that is, until after the calm has come. Most of my attacks happen when I have the chance to sleep or relax, like during the night or at the end of a busy family fun filled weekend.
- My HAE attacks have not decreased over the years
Many people in my family, who lived with HAE their whole lives, told me that they’ve experienced fewer attacks as they’ve grown older. I looked forward to having less attacks, but as the number of candles increased on my cake, I continued to have attacks. Thankfully, I’ve worked with my doctor to come up with a treatment plan that works for me. But please remember that this is my experience, and yours may be different.
What has surprised you about HAE? Let me know in a comment below!
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