If you have been diagnosed with Hereditary Angioedema (HAE), you may feel overwhelmed and unsure of what to do next. HAE is a rare genetic disorder that affects the immune system and causes episodes of swelling, typically in the face, hands, feet, and throat. Because HAE is so rare, many individuals, especially doctors, nurses, and other healthcare professionals aren’t knowledgeable about the disease.
I woke up one day when I was in first grade and I had a stomach ache. I was five years old and didn’t think anything of it. My parents thought it was just a bad stomach ache that would go away later. The symptoms didn’t go away and I ended up having to go to the emergency room. At the time, nobody knew what the cause of it was, not even the doctors. I ended up having to stay at the hospital for a few hours. When the doctors came back, they said that they thought I had appendicitis and wanted me to go into surgery to remove my appendix. My parents gave them the okay and the surgery was performed. After my surgery, the doctor told my family and I that my stomach ache symptoms had nothing to do with my appendix, but they took it out anyway. This is very common for other individuals with HAE, as many people have had unnecessary surgeries as a result of their HAE symptoms. A few days went by and I was back to normal. My family and I still didn’t know what the cause of my stomach ache was, but we were all glad to see me better.
Fast forward a year and I woke up once again, but this time it was my upper lip that was swollen. I went downstairs and I showed my parents. They thought it was some sort of an infection or allergic reaction, and would go away at the end of the day, but it didn’t. Later that night, I went to the hospital and the doctors and hospital staff didn’t know what was the cause of my swollen lip. They kept me there for a few hours but then released me and the swelling went down in the coming days.
I started to see doctors and allergy specialists to determine what was the cause of my random swelling episodes. I worked with a children's hospital in Boston that had a physician that was knowledgeable about HAE. I still see this same specialist, even after many years. Later that year, after a few tests, I was officially diagnosed with HAE. I was very confused and didn’t know anything about this condition. I never heard of it before! No one in my family has had it so it was very confusing for me and my family members how I could be diagnosed with this hereditary condition. Nobody knew what HAE was! At the time that I was diagnosed, there weren't any medications (both prophylactic or acute) to treat HAE. All I would get when I went to the hospital was an IV with glucose. As modern medicine advanced, I was able to go on an acute IV medication to help with my attacks. As of today, I now take an oral pill to prevent my HAE attacks. I now don’t have to worry about getting an attack. Ever since I started this oral medication, my attacks have decreased to nearly zero. I can do anything I want and HAE isn't in the way.
I’ve come a long way from not knowing anything about HAE, to educating myself a lot about it. Working in the HAEA Social Media internship helped me connect with people that have HAE. Before getting involved, I had never talked with or met someone else with HAE. The HAE social media internship gave me the opportunity to connect with people and open doors for the future.
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