HAE UK is an Association of HAE Patients, working together to improve the situation for all HAE Patients in the UK
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What is Hereditary Angioedema (HAE)?

HAE is an inherited condition. If a parent has HAE, there is a 50% chance they will pass it on to their children. Family members who have been tested and who do not have HAE will not pass the disease on to their children.

HAE can also occur with no family history as a spontaneous gene mutation.

HAE is characterised by huge swelling of the tissues (angioedema) which last from 3 to 5 days. These swellings can occur on any part of the body; hands and feet, arms and legs, trunk, intestines, genital organs, face, tongue, neck and airway.

An example of hand swelling

Hand normal     Hand swell

Left – Normal (no swelling), Right – Untreated HAE attack (swelling)


An example of gastrointestinal swelling

Abdominal swell     Abdominal swell

Left – Normal (no swelling), Right – Untreated HAE attack (swelling)
Note – some internal swelling may not show externally


An example of facial swelling

Face swell     Face swell

Left – Normal (no swelling), Right –Untreated HAE attack (swelling)


An Example of throat swelling (with high risk of spreading to block the airway)

Throat swell


Some patients can identify warning symptoms (prodomal symptoms) in the 24 hours before an attack. These symptoms can include extreme tiredness, a rash or tingling over the affected site.

An example of a HAE rash


HAE attacks can start at any time from early childhood, in adolescence or later in life.

The frequency of attacks can vary from once or twice a year to every few days in the most severely affected patients.

Intestinal swelling causes sickness and diarrhoea and very severe pain.

Swelling of the face and tongue can lead to swelling of the airway which is life threatening.


Hereditary Angioedema
Patient Association:
Living for today,
planning for tomorrow.

Registered Charity
Number: 1152591