Living With Hereditary Angioedema

Hereditary angioedema (HAE) is a rare genetic disorder that has unpredictable attacks, The recurrent attacks include painful swelling of the skin and mucous membrane, and they occur in the face, hands, feet, and gastrointestinal tract. In addition to skin swelling, a person with HAE may also experience abdominal pain, extreme fatigue, vomiting, and diarrhea.

While the attacks are unpredictable, certain factors may occasionally trigger them. These factors include minor illnesses, stress, physical trauma, or food intolerance. If you have HAE, making some lifestyle adjustments may help manage the condition.

HAE results from a mutation to the gene C1NH. This gene contains the instructions for producing a protein called C1 inhibitor. HAE typically runs in families, although it can occur spontaneously. HAE affects approximately 1 in 50,000-150,000 people globally.

Sometimes doctors misdiagnose HAE because the symptoms look similar to other common conditions like appendicitis, contact dermatitis, or irritable bowel syndrome.

Making lifestyle adjustments and possibly taking medication can help a person reduce the frequency and severity of HAE attacks. It also helps to recognize and learn to avoid triggers. Triggers will vary from person to person, but typically they include: