HAE symptoms

Attacks with swelling and pain

Hereditary Angioedema (HAE) patients experience recurrent episodes of swelling in the hands, feet, face, gastrointestinal tract, genitals, and larynx (throat) that can last from two to five days. The frequency of and severity of attacks varies dramatically among patients, and even among those within the same family.

A survey of HAE patients in Italy (over 500 identified and followed) revealed that slightly less than one half of untreated patients have more than one attack per month, and forty percent have 6 to 11 swellings per year.

HAE-related swelling is not the same as swelling due to allergies and cannot be treated as an allergic reaction – with antihistamines and corticosteroids. About 25 percent of Hereditary Angioedema (HAE) patients experience a non-pruritic erythematous rash that often occurs shortly before or during the attack (prodrome).


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    Swelling involving the feet and hands is uncomfortable, can be extremely painful, and often prevents patients from being able to participate in normal daily activities.

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    Gastrointestinal attacks are characterized by excruciating abdominal pain, nausea, vomiting, and diarrhea caused by swelling in the intestinal wall. These symptoms are distinguishing features of Hereditary Angioedema (HAE) because abdominal pain is rarely seen in other types of angioedema.

    Hypovolemia (an abnormal decrease in blood volume) can occur from a combination of fluid loss, plasma extravasation, and vasodilation, and can progress into hypovolemic shock.

    Historically, approximately one third of patients with undiagnosed Hereditary Angioedema (HAE) have unnecessary surgery during abdominal attacks because the symptoms mimic a surgical emergency.

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    Laryngeal edema is the most significant feature of HAE, because laryngeal swelling can close the airway and cause death by asphyxiation. Studies of Hereditary Angioedema (HAE) families indicate that, without treatment, death from laryngeal edema can be as high as 30 percent.

    Surveys of Hereditary Angioedema (HAE) patients reveal that approximately 50 percent experienced at least one laryngeal episode in their lives. Laryngeal edema must be treated as a medical emergency, and patients should seek prompt treatment as soon as throat swelling is suspected.

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