HAE patient
stories

First symptoms

I was nine years old when I woke up with a horrible stomachache and I knew something was wrong. My mother had already been caring for my older sister through similar attacks for years. She knew what the future held for me, but we didn't know it was called HAE.

Lost years

When I was 18, my primary care doctor was unable to explain my illness. Instead he suggested that I avoid stress and not go to college. I took stock of life and enrolled anyway.

My attacks became more frequent and strong when I started birth control. They were not just stomach attacks now. Random parts of my body—including my elbows, feet and forearms—would swell. I reluctantly submitted to my first endoscopy. Once again, there were very few answers.

I started practicing yoga, I embraced hiking, and I traveled internationally whenever I could. My best friend understood that traveling with me would mean great adventures, as well as at least one day of taking care of a vomiting mess.

A severe intestinal attack sent me to the emergency room, dehydrated and vomiting. I was triaged for kidney stones or gallstones and put in a waiting room. The pain was so intense; I remember crawling to beg a nurse for a bed. The doctors thought it was cancer. They removed a foot of my intestine and found no cancer—and no answers to my chronic health issue.

Today, I have an unbreakable bond with my sister, because we both understood each other when no one else did.

Liz, Living with HAE

Discovering HAE

I was 8 months pregnant when my sister was diagnosed with HAE. I went straight to the internet, and my body suddenly made sense to me after 35 years. I would have never connected my random swells to my stomach issues. I reached out to the US Hereditary Angioedema Association and got a list of available specialists in my area after I was diagnosed with HAE.

Life after the HAE diagnosis

We learned that my son has HAE. I feel guilty about this. My mother reminds me that she's glad she brought me and my sister into this world, and I know she is right. I can't imagine my world without my son.

Today

My son has not had his first attack yet. When he does, it will be very different than mine, because we will know what is happening, because he is connected to a caring and knowledgeable healthcare team, because we are not alone—we now have the HAE community to walk with us.

Today, I have an unbreakable bond with my sister, because we both understood each other when no one else did. My own physical suffering has given me reservoirs of empathy for others in their suffering. And my own dependency on so many people who have cared for me has compelled me to live out my life paying that care forward.

Diagnosis

My mother and several other people in my family have HAE, so it was no surprise when I was diagnosed at 9 years old after being tested by my allergist. When I got diagnosed, I thought to myself, "HAE is not gonna get me. I'll be fine." And I was. I lived happily without swells for several years.

First symptoms

My first attack was devastating. I was in my first semester of college when I woke up one morning and couldn't open my eyes. I jumped out of bed and peeked at the mirror. My face was totally swollen. I remember being terrified that it would never go back to normal.

After that first swell, my attitude toward HAE changed. I was paranoid and worried that HAE would strike. My first swell also set off a cascade of swells in my face and stomach over the following months, impacting my performance in school and the relationships I had built while away at college. When I went to the university's disability center for help, they didn't believe me, and that tore down my self-esteem.

I only left my house to drive to the hospital to get an attack treated. That's no way to live life. If I did have a swell that put me in the hospital, I wouldn't receive the care I needed. Doctors would always insist on running additional tests, but I knew I had HAE and I knew what a swell felt like.

I advocate for myself when it comes to getting the care I deserve for my HAE—and that's important. HAE patients deserve the best quality of care.

Chaeli, Living with HAE

Discovering HAE

I eventually found my way to a specialist who helped me craft a treatment plan with a preventive and on-demand medication, that helped manage my condition. That was a big turning point for me. I finally felt like I found someone who listened to me and knew what they were doing when it came to managing a patient with HAE.

I was lucky to meet, and eventually marry, a wonderful man named Sean. Although I find it awkward to tell someone new about my HAE, I was open and up front about it with him from the beginning. When I told Sean, he was interested, asked me questions and wanted to learn more.

After marriage, our thoughts soon turned toward having a family. Having kids wasn't something I thought I wanted, in part because I was afraid of passing HAE to my child. Thankfully, I was able to talk at length with my doctor about how I would manage having a child with my HAE, so that made me feel more comfortable and prepared.

Today

There is so much that has gone into my journey. I've chosen to travel—I went to Cuba in 2019; I've chosen to have a beautiful baby boy that means everything to me; I've chosen to work with my doctors to find a treatment plan that works for me; and I've chosen to become a part of the HAE community, a community I owe so much to.

I advocate for myself when it comes to getting the care I deserve for my HAE—and that's important. HAE patients deserve the best quality of care. We're often dismissed or told our condition isn't serious. Wrong. Our care is important, and we must be unwavering despite our fears, strong when faced with our insecurities, and brave in standing up and advocating for ourselves. Your voice matters.