The very first HAE symptom I had brought me to the operating table. Unnecessarily.

It was summer, with holidays and grandmother’s birthday party- a big family reunion in the garden. We children were spending time playing with animals and climbing cherry trees. Everyone was in a good mood.

I was climbing a tree to pick fruit. As I was trying to reach for the fruit in the treetop, I stepped on a dry branch and fell on my belly. I felt terrible pain and dizziness. What was going on…? I fainted for a few minutes. I came to my senses inside the house, lying on the bed. Parents, aunts, cousins were around me. I wasn’t bleeding, but kept vomiting and had a terrible stomach ache. And my belly kept growing. I don’t remember who called the local doctor, but he frowned and called an ambulance.

I was feeling worse and worse. I was sent to the hospital for blood collection, ultrasound, etc. The doctor did an abdominal tap… A great mystery. What could it be? Perhaps an organ inside me ruptured and it’s difficult to find it. If so, it might cost me my life… In tears, mom agreed with immediate surgery. That was the only way the doctor could make sure that nothing had ruptured in my abdomen… I woke up at night, after surgery, with intubation, and even more severe abdominal pain.

I was alone, my parents were not allowed to stay there. Mom came in the morning. The doctor said he had found nothing, just a very swollen abdomen. He searched for bleeding everywhere, that’s why I ended up with a 17-centimeter scar. Terrible mystery and unnecessary surgery. The surgeon performed the surgery, found nothing, and then closed the entire abdomen with a suture.

Gradually, over the next 3 days, the abdominal swelling subsided. But the scar remained and the abdominal muscles have never worked as before. After the surgery, the doctor prescribed a diet and imposed restrictions on sports activities for at least one year. I was 11 years old. This unfortunate incident ended my happy childhood and started my painful adolescence.

This is what happened after my very first swelling caused by HAE. We realized that it had been a symptom of hereditary angioedema a few years later, after further painful symptoms and hospitalizations, when doctors finally found out what the mysterious diagnosis was.

Story by Anna, now an adult

HAE is a very rare condition in which swelling occurs in various places in the body. These attacks of swelling can vary in frequency and severity. Swelling in the throat is extremely dangerous and can be fatal as airways can be restricted. There are several known triggers for attacks but sometimes they happen seemingly without cause. Because HAE is so rare, attacks can be misunderstood and therefore treated incorrectly. Our author above provides a sad example of this and demonstrates the need to raise awareness of HAE. She is, unfortunately, not the only person with HAE who has undergone unnecessary surgery due to an attack. Learn more about HAE here and here.