Many things are thought to be possible triggers of hereditary angioedema (HAE) attacks, such as anxiety, stress, hormones, and physical traumas. Some patients can’t identify any triggers for their attacks. Every patient’s experience is different. For me, trauma can be a trigger, but it’s usually not until the “trauma storm” has passed and things start to calm down that I get an attack. I don’t always know when an attack will happen, but by knowing my body, my HAE, and its triggers, I can better plan ahead for the unexpected.
Has anyone faced doctors who doubt or don’t understand your hereditary angioedema (HAE)? Or does anyone else identify with holding your stomach during an HAE attack, putting on a happy face so you won't ruin your family's fun? How did those moments make you feel? I know how I felt—alone!
When I think of the hurdles I've had to overcome as a person with hereditary angioedema (HAE), it seems the mental and emotional challenges loom larger than the physical ones. Don't get me wrong--I've endured enough painful attacks for a lifetime. However, HAE also undermined my sense of self, and that was my biggest hurdle to overcome.
Having cared for my husband, David, who has hereditary angioedema (HAE), for so long, one might think that I have come to terms with HAE. Well, I haven’t. But my denial isn’t based upon my inability to accept the disease itself; rather, it is denial regarding my inability to control the disease.
Approaching my newly recommended gastroenterologist’s office for my second appointment, I felt my heart start to race. I had been in dozens of doctor’s offices, countless times before. Yet, this day was different. Today, my doctor had told me, he’d have answers. After six painful years of searching, my journey for a diagnosis was finally coming to an end.