HAE is a chronic condition and attacks can be recurrent and unpredictable, but the condition can be managed with appropriate support and treatment.
Making sense of HAE
HAE symptoms
Symptoms include recurring swelling attacks that commonly affect the hands, feet, face, throat, genitals, and abdomen or gastrointestinal tract.
Abdominal attacks are among the most common symptoms of HAE and are often overlooked. Internal swelling in the gastrointestinal tract can cause severe pain, nausea, vomiting, and diarrhea. These attacks can mimic other abdominal emergencies, sometimes leading to unnecessary operations before an HAE diagnosis is made.
Face and throat attacks are the ones that demand the most urgent attention. Unlike swelling in the hands or feet, which is painful and disruptive, a face or throat episode can progress to block the airway itself. Because of this risk, anyone who suspects a facial or throat attack is urged to treat it as an emergency from the start and seek immediate medical attention.
Hand, feet, and genital attacks cause painful swelling that can make everyday tasks like walking, gripping objects, or even sitting difficult. These attacks aren't typically life-threatening, but they can be severe enough to disrupt daily life for days at a time.
HAE triggers
Many day-to-day situations can trigger attacks, including heat, stress, and injury. However, swelling can also occur without a known trigger.
Dealing with Triggers
Managing HAE shouldn't mean giving up the things you enjoy to avoid triggers. Talk with your doctor about how HAE affects your daily life so you can work together toward better control.
HAE is lifelong and can change over time. Attack frequency, severity, and triggers may shift, so management plans should be reviewed and adjusted with a doctor periodically rather than treated as fixed.
Diagnosing HAE
HAE is a genetic condition, meaning it can affect multiple members of the same family. An appropriate health care professional can diagnose most types of HAE based on factors like: family history, symptoms, and laboratory testing to measure the amount and function of the C1-inhibitor.
Type I: C1-inhibitor levels are low. This is the most common type, making up about 80%-85% of cases.
Type II: C1-inhibitor levels are normal or even elevated, but the protein doesn't function properly. This type makes up roughly 15 to 20% of cases.
HAE with normal C1-inhibitor: C1-inhibitor levels and function are typically normal. This type is often linked to mutations in the F12 gene and other genes. It's a rare form of HAE.
Take a closer look at HAE
This video from the US Hereditary Angioedema Association explores the science and biology behind HAE.