I began to experience symptoms of hereditary angioedema (HAE) at a young age, but I wasn’t diagnosed with it until the age of 50, so my journey to a diagnosis was pretty long—but not uneventful.
I’ve realized that I was lucky to receive a hereditary angioedema (HAE) diagnosis fairly quickly. Many people I’ve met had to wait years before being correctly diagnosed. HAE symptoms may be hard to diagnose: random odd swellings or repeated debilitating abdominal attacks may be identified as allergies, a "nervous stomach," appendicitis, or the dreaded "psychosomatic illness." I’ve learned that it’s my job to clearly relay my HAE symptoms to my doctors, so they have the information they need to help me.
When I started my journey to a diagnosis, I didn’t know what to expect. I just wanted to find out why I was having visible swelling. I thought I was just prone to the stomach flu or had a very sensitive stomach—I was not aware those symptoms were because of hereditary angioedema (HAE).
At times, life with hereditary angioedema (HAE) can feel exceptionally challenging and lonely. Depending on where someone with HAE lives, there may not be too many “swell” friends (as I like to call them) around, and I know I’ve sometimes felt like the only person on the planet having these experiences.
My husband and I learned early on that it is important to share as much information as possible with our healthcare team. That way, they can help us treat my husband’s hereditary angioedema (HAE) attacks.