Getting started
with an HAE
management plan
Do more to manage your hereditary angioedema (HAE)
There is no cure for hereditary angioedema (HAE), but there are things you can do to help manage this unpredictable condition. Your doctor can work with you on creating a complete, individualized management plan that meets and evolves with your needs. They can also help you understand the 2 hereditary angioedema treatment types (preventive and on-demand) that can work together to manage your HAE.
Consider this
When making your HAE management plan with your doctor, check out these 2020 US Hereditary Angioedema Association (HAEA) guidelines and recommendations:
In addition, your doctor will likely recommend you continue to avoid your known triggers as much as possible.
Have at least 2 doses of an on-demand treatment with you at all times
Discuss preventive treatment with the doctor at their first visit and every visit thereafter
Two different hereditary angioedema treatment types
You're probably aware of the treatments available to you. When you tell your doctor how HAE is impacting
your life, they will get a clearer picture of what medication would make the most sense for you.
Preventive treatment
Taken to help reduce the frequency and severity of attacks before they happen
On-demand treatment
Taken when an HAE attack happens, to help reduce the effects of the attack
A comprehensive HAE management plan may include both preventive and on-demand therapy.
Be sure to work with your doctor to find the right option(s) for you.
"We knew treating with both an acute and preventive medication wouldn't stop our son from having attacks—but it might prevent some from happening all together. If it stops even one attack, then we made the right decision." Beth, Living with HAE and caring for her son who has HAE
There is this constant worry. This intense level of being on alert didn't subside until I figured out an effective management plan with my doctor.
Matt, Living with HAE
Every HAE attack is worthy of treatment
Wondering whether or not you should treat an attack? Even if it seems mild, it's best not to dismiss it. When in doubt, ask your doctor. They can help you understand the benefits of using on-demand treatment for all attacks, no matter how mild or severe they might be.
Remember, an attack affecting the airway is potentially life-threatening and should be treated as soon as possible.
Before meeting with your doctor
Be ready to provide as much information as you can about your hereditary angioedema. Answer a few questions about your symptoms, triggers, and how HAE has impacted your life.
Take the HAE AssessmentWhen is hereditary angioedema (HAE) diagnosed?
Because HAE is rare, getting an accurate diagnosis can be challenging. In fact, 1 survey of 313 patients showed that up to 65% of people with HAE have been misdiagnosed with another condition prior to receiving their HAE diagnosis.
