Patient stories

Explore real hereditary angioedema (HAE) experiences

Read stories from people who have been diagnosed with HAE. Learn from their personal experiences, from living with mysterious symptoms to discovering their diagnosis and beyond.

Click to read their stories

Real HAE patient Chaeli

Lesa

– Diagnosed with HAE in 1980

As the only woman in her family who has HAE, Lesa knows her journey will be different from those of her brothers.

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Real HAE patient Alex

Alex

– Diagnosed with HAE in 2014

Since his HAE diagnosis, Alex is done suffering in silence. He’s proactive about his HAE, and he believes he’s a better man for it.

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Real HAE patient Liz

Liz

– Diagnosed with HAE in 2013

Before being diagnosed with HAE, Liz and her sister spent years experiencing mysterious symptoms – and building an unbreakable bond.

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Real HAE patient chaeli

Chaeli

– Diagnosed with HAE in 1997

Chaeli’s journey with HAE has been an evolution from fear to freedom, which began in childhood. Today, she’s bravely navigating life with HAE.

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First symptoms

  • My mom says that I was 18 months old when I had my first swelling attack. My mother had seen them before, because my father, brothers, and many other family members experienced the same thing—but no one had a clue what it was.

Lost years

  • Growing up, my family would just tough out our swelling attacks. We didn’t realize that our “stomach problems” were related to our mysterious swelling episodes.

Lost years

  • Tragedy struck when I was 15. My oldest brother died from what we later found were complications from a severe facial attack. I don’t remember a lot about that day, but I do remember my dad’s face. He was grief-stricken.

Discovering HAE

  • After losing my brother, my family couldn’t accept ignorance about our condition anymore. Eleven members of my family, including myself, got diagnosed with HAE shortly after my brother’s death.

Life after diagnosis

  • There were no treatment options available, and little was known about the condition. Without any information or outside support, getting a diagnosis didn’t mean much.

Life after diagnosis

  • I developed insecurities. I hated the way my feet would swell, and I couldn’t wear shoes, and my hands would swell so big that I couldn’t brush my teeth or dress myself. My biggest fear wasn’t death. It was the fear of not being able to raise my children. They were my life.

Life after diagnosis

  • The night my husband rushed me to the emergency room because of a severe facial attack, I recalled my brother’s death. I’m not ready to die, I thought – I am happily married and have children to raise!

Life after diagnosis

  • Surviving made me become more proactive. I wanted to meet someone I could relate to, someone who knew what the letters "HAE" meant to a woman living with it. I attended my first HAE conference. I met hundreds of people like me. I discovered options, choices and resources to help me on my journey.

Today

  • I’ve realized that I’m a wife, a mother, and a woman with HAE. All of the trials, the pain, the uncertainty I’ve endured have helped me become the strong woman I am now.
  • Would you like to hear more personal HAE stories? Explore helpful videos from people who are diagnosed with HAE.

First symptoms

  • I began experiencing HAE symptoms when I was 13 years old. My twin brother and I had weird and painful swelling in our hands and feet. We just chalked up our abdominal attacks to something we ate. Or, as our mom would insist, a need for more bran.

Lost years

  • There were times when I was so ashamed and embarrassed by my HAE; it crushed my ego as a young man. When I was 16, I went in for surgery to remove my wisdom teeth. After the procedure, my face was grossly swollen. I'll never forget the looks people in the waiting room were giving me. I could see abject fear and horror in their faces.

Lost years

  • We were never able to figure out what caused the attacks, so my brother and I got very good at just dealing with them. We went on with our lives.

Lost years

  • HAE symptoms would show up unexpectedly. I had an attack once in my early 30s that was so bad I could not close my mouth and was drooling everywhere. I canceled a date with a woman I was seeing at the time, but she came to my house anyway. I couldn't explain what was happening, because I couldn't talk or write.

Discovering HAE

  • My twin brother was rushed to the emergency room. Fortunately, a young doctor was able to correctly diagnose him before a potential laryngeal attack became life-threatening. Several days later, my brother called to tell me what had happened.

Discovering HAE

  • I started learning everything I could about HAE. When I went to an immunologist, he listened to my symptoms and family history before ordering a blood test. Within 2 weeks, my HAE diagnosis was confirmed.

Life after diagnosis

  • I’ve come to believe that men, in particular, MUST learn to be more open and honest about our health issues and communicate with our family and spouses; I encourage other men to talk to their doctors and keep a small log about day-to-day health conditions.

Life after diagnosis

  • Since my diagnosis, I’ve learned that it’s important for families to speak about HAE without feeling shame. Now my brother and I talk openly about HAE, and I don’t try to hide my condition.

Today

  • I no longer try to live up to the “tough guy” standard, and I encourage others to take the first step in owning and being proactive about HAE. My HAE doesn’t live in the dark—it lives in the light. And I’m a better man for it.
  • Would you like to hear more personal HAE stories? Explore helpful videos from people who are diagnosed with HAE.

First symptoms

  • I was 9 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.

Lost years

  • 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.

Lost years

  • 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 1 day of taking care of a vomiting mess.

Lost years

  • 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.

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 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. We will know what is happening, because he is connected to a caring and knowledgable healthcare team, and we now have the HAE community to walk with us.

Today

  • 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.
  • Would you like to hear more personal HAE stories? Explore helpful videos from people who are diagnosed with HAE.

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.

First symptoms

  • 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

First symptoms

  • 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.

Discovering HAE management

  • 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.

Discovering HAE management

  • 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.

Discovering HAE management

  • 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 while also managing 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 who 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.

Today

  • 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.
  • Would you like to hear more personal HAE stories? Explore helpful videos from people who are diagnosed with HAE.

What’s your journey?

Takeda is looking for patients and caregivers to share their experiences.

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