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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 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

  • 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 grin and bear 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 to this mysterious swelling disease, we knew that we couldn't keep "toughing out" our swelling attacks. I was diagnosed with HAE — along with 10 other members of my family.

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.

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 severe 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 no 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 HAEA 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 frequently. 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 PMS.

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 horrified 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 persistence. When I’ve pushed through difficult times, things have worked out in ways I never imagined. Today, my daughter is thriving, well on her way to fulfilling her dreams and living the life I have always hoped she would have.

 

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

Sarah

Diagnosed with HAE in 2006

My first symptoms

  • Shortly after puberty, I started getting terrible stomachaches on a regular basis. Dealing with the constant pain led to fatigue. And strangest of all, I began experiencing random hand swells. The family doctor assumed they were allergic reactions, so for years I just dealt with them.

Lost years

  • In college, I was rushed to the urgent care clinic because I suddenly felt sick to my stomach. The doctor thought my appendix was about to rupture and immediately sent me to the hospital. I was admitted, but nothing was found.

Lost years

  • After college, I pushed myself with a demanding job. More than once, I'd wrap my swollen hand in a bandage and lie about what caused it, hoping to get through a presentation without drawing too much attention to myself.

Discovering HAE

  • I suffered a severe attack that sent me to the hospital. My husband, who was a doctor there, told a colleague about the symptoms I was experiencing. That doctor immediately recommended a C1-inhibitor blood test. He'd just gotten back from a medical conference where he'd heard about HAE.

Discovering HAE

  • When I got my diagnosis, I was confused, because I didn't know anything about HAE or what it could mean for my future, but I was also relieved to know that my condition had a name.

Life after diagnosis

  • I was carrying twins when our family suffered a terrible tragedy: we lost one of the babies. My doctor recommended that I stop working and avoid stress to help “protect the integrity of the other embryo,” so that’s what I did. Thankfully, I gave birth to a healthy baby girl. I was determined to be the best mom for my daughter.

Life after diagnosis

  • I experienced a stressful time period that made it seem like life was just one HAE attack after another. I was in and out of the hospital, and with each trip, fewer people offered support. I reached out to the HAEA, went to speaker programs, and established a relationship with a nurse I met.

Life after diagnosis

  • There are some things I've tried to shelter my daughter from, but I do not hide my experiences with HAE. Because HAE can be unpredictable, it's important to me that my daughter feels empowered, not scared.

Today

  • I look back at the challenges I faced and how I was just surviving. I had to dig down deep and find the strength to do more than survive. I may have started as a girl in a small town who had the way paved for her, but now I take charge of my life and make my own path.

 

  • 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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