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Discover real HAE journeys

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

Click on a photo to read their stories

Click to read their stories

  • HAE patient

    Lesa

    Diagnosed with HAE in 1980

  • Hereditary angioedema patient

    Alex

    Diagnosed with HAE in 2014

  • Real HAE patient

    Liz

    Diagnosed with HAE in 2013

  • Real hereditary angioedema patient

    Marsha

    Diagnosed with HAE in 1989

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Lesa

Diagnosed with HAE in 1980

First symptoms

  • My mom says that I was 18 months old when I had my first swelling attack. She'd 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. 11 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 journeys? Come to a live event to hear from other people diagnosed with HAE.

Alex

Diagnosed with HAE in 2014

My 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 cancelled 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 two 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 journeys? Come to a live event to hear from other people diagnosed with HAE.

Liz

Diagnosed with HAE in 2013

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.

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 one 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 issues.

Discovering HAE

  • I was eight 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 and 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, 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

  • Today, I have an unbreakable bond with my sister, because we 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 journeys? Come to a live event to hear from other people diagnosed with HAE.

Marsha

Diagnosed with HAE in 1989

My first symptoms

  • One summer in my childhood, my parents decided to take a family trip. Just as we arrived at Yellowstone, I doubled over with pain and nausea. I endured the next four days in agony, not understanding why I'd gotten so sick.

Lost years

  • I experienced attacks of vomiting and pain every few weeks. After a few of these episodes, my parents took me to the family doctor, who ordered an X-ray and said there was nothing wrong with me, or that it could be a bad case of Premenstrual syndrome.

Lost years

  • My father also suffered from stomach problems, but they weren’t nearly as severe or frequent as mine. We also both experienced odd swelling of our hands or feet, but we chalked that up to some sort of allergy.

Lost years

  • Leaving home at 18 marked the beginning of nearly two decades of medical consultations that provided me with no relief. Doctors scratched their heads, and I felt dismissed and depressed at their inability to help me.

Lost years

  • Pregnancy gave me respite from my attacks after the first trimester. But very soon after giving birth, they were as bad as ever. I’ll never forget the sight of my three-year-old son carefully carrying cups of water to me, telling me that I was going to be OK.

Discovering HAE

  • I dreaded seeing a skeptical look on another doctor's face, but I decided to make one more appointment. When testing showed that I have HAE, I was relieved to know that my condition had an actual name, but I was also frightened when he said it was potentially life threatening. I wanted to be around to raise my children.

Life after diagnosis

  • I was heartbroken when my daughter began to display symptoms of HAE in her teens. Seeing her contort herself into the same positions that I had assumed so many times, I felt like I was in the attack right along with her.

Life after diagnosis

  • In the pre-Internet days, there were few resources for people living with rare diseases. Fortunately, I was able to make connections by attending conferences where I met people who had gone through the same things I had.

Today

  • My journey with HAE has taught me patience and perseverance. When I’ve pushed through difficult times, things have worked out in ways I never imagined.

 

  • Would you like to hear more personal HAE journeys? Come to a live event to hear from other people diagnosed with HAE.

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