I consider myself pretty lucky when it comes to my experiences with doctors. Unlike many of my friends with HAE, I was diagnosed without seeing multiple physicians over a long period of time.
Walking into my immunologist’s office for the first time, I was incredibly anxious. I was referred to him just after I’d been diagnosed with HAE, and even though I had a renewed strength of mind from now knowing that this condition is real and has a name, I was still haunted by the physical and emotional scars of my medical journey.
As some of you may already know, I have been “living with HAE” for about 15 years. I don’t have HAE, but several of my loved ones do, including my husband. The journey of living with HAE as a caregiver can be exhausting, frustrating, and heartbreaking. But with the support I’ve received from my family—in all the forms that family takes—the weight of care giving is no longer quite so heavy on my shoulders.
Hi, I’m Stacey and my husband, David, has HAE. I met David when we worked together as police officers. During my time on the force, I learned that it’s hard to help someone who doesn't want help or who is in denial. Little did I know, that lesson would hit home when I found out David has HAE. Using this blog, I hope to inspire others living with HAE—and their caregivers—to talk about this illness, to communicate openly, and to remember that they’re not alone.
I’ve always enjoyed traveling, but living with HAE hasn’t always made travel easy.