Understanding why attacks happen and how to manage them
It is estimated to affect 1 in 50,000–150,000 people worldwide. An estimated 9,000 patients are diagnosed in the United States with HAE.
Attacks can vary significantly between each person living with HAE
Swelling can occur in different parts of the body, including hands, feet, genitals, stomach, throat, and face
In serious cases, swelling in the throat may require emergency intervention
Attacks can be triggered by emotional stress or physical trauma but also often occur without a known trigger
Even if someone is taking prophylaxis (preventative) treatment, they may still experience attacks
WHEN A PERSON LIVING WITH HAE RECOGNIZES THEY ARE HAVING AN ATTACK, IT IS IMPORTANT TO TREAT
AS SOON AS POSSIBLE
WITH ON-DEMAND TREATMENT (ALSO CALLED ACUTE TREATMENT).
Although attacks vary and are highly individualized, people living with HAE can recognize the onset of an attack by a variety of early symptoms that may include*:
Tightness
Pressure
Swelling
Pain or ache
Itchiness
Tingling
Unwell feeling
Fatigue
*Exact locations not specified.
HAE TYPE 1
People living with HAE type I have low levels of a protein called C1 inhibitor
HAE TYPE II
People living with HAE type II have normal levels of the C1 inhibitor protein, but it does not function properly
HAE TYPE III
People living with HAE type III experience swelling attacks even with normal levels and normal function of the C1 inhibitor protein
• Swelling from HAE is not due to allergies and cannot be treated in the same way as an allergic reaction
• Unexplained abdominal pain from HAE can sometimes be misdiagnosed as appendicitis, indigestion,
or irritable bowel syndrome
People who experience these kinds of symptoms should talk to their healthcare provider about whether
HAE might be the cause. Understanding what it’s not is the first step toward the right diagnosis.
HAE DIAGNOSIS INVOLVES BLOOD TESTS THAT MEASURE C4 AND C1 INHIBITOR PROTEINS.
THESE TESTS CAN DETERMINE HAE TYPE, WHILE GENETIC TESTING CAN FURTHER CONFIRM THE DIAGNOSIS.
Prophylactic or preventative medication that can be taken on a regular schedule to reduce the frequency and/or severity of attacks
On-demand medication that is taken early at the onset of an attack to quickly stop and control swelling
Even though prophylactic treatment may reduce attack frequency, patients should still have immediate
access to on-demand treatments
• That every person living with HAE should have constant, reliable access to 2 doses of on-demand medication
• That patients treat attacks early to stop them from getting worse
• That all HAE attacks are eligible for treatment, regardless of location or severity
Start a conversation with your doctor.
Download a guide to help you discuss the challenges you may be facing and to co-decide on a plan to help you treat attacks earlier.
VIEW THE GUIDE
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