WHAT CAUSES HAE?
People with HAE are missing or have low levels of a protein called C1 esterase inhibitor (C1-INH)
In some cases, the C1-INH levels are sufficient but the protein does not function properly.
The defect with C1-INH lies within a person’s genetic code, which is why HAE runs in families.
Without the right amounts of working C1-INH, blood vessels and capillaries in the body can become leaky and allow fluid to build up in the surrounding areas. This leads to the swelling and the pain experienced during an attack.
JUST YOUR SYMPTOMS
THE SYMPTOMS OF HAE
Hereditary angioedema (HAE) is a rare inherited disease that affects about 1 in 10,000 to 1 in 150,000 worldwide
The symptoms of HAE are often confused with other medical conditions like allergies or stomach problems, so it’s important to talk to your doctor about all your symptoms.
HAE usually causes swelling in specific parts of the body, though swelling can occur anywhere.
Early testing and diagnosis is key when treating HAE
Misdiagnosis is common
In a survey of 313 patients, nearly
people received a misdiagnosis
In a survey of 313 patients, about
people had an unnecessary medical procedure
The test to diagnose HAE
To confirm HAE, your doctor will order blood tests if HAE is suspected.
When to test: If you have a family history of HAE, experts recommend testing around 1 year of age.
DID YOU KNOW THERE ARE 3 TYPES OF HAE?
HAE is classified into 3 types based on what problem the genetic defect causes.
A person can have:
- Low levels of C1-INH in the body (type I HAE)
- Poorly functioning C1-INH (type II HAE)
- HAE with normally functioning C1-INH (formerly known as type III HAE). This type is extremely rare and not well understood
Women often experience HAE differently than men do
Women With HAE:
- Are more likely to be symptomatic than men
- Experience changes in the overall frequency of attacks as they go through various life stages (childhood, puberty, menstruation, pregnancies, and menopause)
Estrogen Plays a Role
- Fluctuations in estrogen, a hormone, may trigger HAE attacks and affect the severity/frequency of the disease
HAE during pregnancy
- Create an individualized HAE treatment plan for each pregnancy
- Avoid steroids during pregnancy
- Have an acute treatment available at the facility where you plan to deliver
- Before taking any HAE therapies, consult with your doctor if you are pregnant or considering becoming pregnant
See a helpful presentation about women with HAEDOWNLOAD
During pregnancies, 1 in 3 had more attacks, 1 in 3 stayed the same, and 1 in 3 had fewer attacks.
The World Allergy Organization Recommends C1‑INH as the Preferred Therapy During Pregnancy.
When a child has HAE...
Symptoms in children with HAE usually begin in the first or second decade of life.
- Attacks are usually infrequent before puberty
- Early onset and frequent attacks in childhood predict more severe disease in adulthood
of children with HAE have mild
symptoms by age 6
Children who have 1 parent with HAE have a 50% chance of inheriting the disease
LIVING A FULL, ACTIVE LIFE WITH HAE
If you or a family member has HAE, you may be concerned about how it will affect your life. Many people find they can successfully manage the condition by working with their doctors to live healthy, active lives.
Having HAE means you need to take a few precautions, such as:
- Identifying personal triggers and symptoms
- Always having an on-demand rescue treatment nearby
- Working to reduce physical and emotional stress
The more you learn about HAE, the more in control you’ll feel.
Recognize your triggers
Although HAE attacks are often unpredictable, some potential triggers have been identified: