From what I could tell, there was a huge lack of knowledge about HAE. When I would go to the hospital for help during an HAE attack, nurses and other patients could only pity me, wondering how I lived like I did. Even though I had signs and symptoms of HAE for years, I didn’t receive my official diagnosis of HAE until seven years ago. And up until a little more than five years ago, there were no treatment options for HAE attacks available for doctors to prescribe for me.
My illness left me feeling stranded and disconnected from the world, wondering each time I had an attack if there would be a tomorrow. These feelings did nothing but deflate my confidence and self-worth.
Denial quickly began to set in; it seemed the easiest option at the time.
For a long time before I was diagnosed, instead of going to the doctor, I would just ride out HAE attacks at home and hope for the best. Well, I’d think, I can waste my time waiting out my attacks hiding in my house just as easily as I can in an uncomfortable hospital room! Not an attitude I’d ever take for any attack anymore—especially because I learned that the attacks could be serious and involve my throat. Laryngeal attacks can be life-threatening, so I need to immediately go to the nearest hospital emergency room if I experience any attack that involves my throat.
But back then, before my diagnosis, I would find myself ignoring attacks. I’d tell friends, “It’s just a stomachache” or “I don’t feel well today” when I cancelled plans. I became unreliable, never knowing when an attack would happen.
Now, my doctor and I have a plan in place. I have an acute HAE treatment that works for me, and I feel confident discussing my treatment plan with unfamiliar doctors and nurses if I need to go to the hospital—though it’s also nice to know that I could contact the US HAEA Emergency Line for additional support in those situations. The US HAEA Emergency Line is available, toll-free, at 1-800-549-3547.
Plus, I’ve learned a lot through educational programs like the Shire Patient and Caregiver Ambassador Programs, and thanks to this blog, I get to share with all of you! You can share with me by leaving a comment below!
It’s much better facing tomorrow when I have a plan in place.