Whether you have just been diagnosed, or have been living with HAE for some time, it’s important to understand the disease and to be prepared for your next attack.
HAE causes repeated episodes of swelling that can occur at any time, and in almost any part of the body. HAE is not an allergy or allergic reaction. It is a disease that may be inherited, but can also occur without any family history. People with HAE tend to experience their first attack early in life, with symptoms increasing around puberty.
Hear a patient story
Daniel Soteres, MD
Asthma & Allergy Associates, Colorado Springs, CO
Some of the causes of HAE include:
Not having enough of a blood protein called C1-INH
C1-INH that isn't working properly
Having enough working C1-INH in the blood prevents the chain of events that lead to symptoms of an attack.
HAE attacks can be painful and disrupt normal daily life. Fortunately, there are effective treatments that can help
Treat HAE at the first sign or symptom of an attack
HAE attacks can occur anywhere on the body, and vary in length and severity. Therefore, it is important to treat HAE at the first sign of an attack.
Learn to recognize the early signs that an attack may be coming. These vary from person to person and may include:
Fatigue
Rash
Stomach upset
Muscle and joint pain
Stomach cramps
Numbness or tingling
Headache
Many HAE attacks occur without an obvious "trigger." However, you may also come to recognize certain events as triggers. These may include:
Anxiety
Stress
Minor injuries
Dental procedures
Medications
Infections
Hormonal changes, such as those occurring during pregnancy or menstruation
Symptoms and triggers
Daniel Sotores, MD
Asthma & Allergy Associates, Colorado Springs, CO
Have a plan to treat your HAE attacks
In addition to being aware of the warning signs of an attack, you should have a treatment plan in place to address each HAE attack as soon as it occurs.
Work with your healthcare provider to ensure that you have a treatment plan ready and therapy available so you’ll be prepared to treat your next HAE attack.
HAE advocacy
If you're suffering from HAE, there is an organization working diligently to make sure you know you're not alone
The US Hereditary Angioedema Association (HAEA) is a nonprofit patient advocacy organization dedicated to serving people with angioedema. They provide patients and families with a support network and a wide range of services.
Preparing for Your Visit
Prepare for a visit with your healthcare provider with this helpful discussion guide.
