Hereditary angioedema (HAE) is a rare condition, so finding a doctor that knows about this inherited blood disease is key. The World Allergy Organization recommends seeing an HAE specialist at least once a year.
Here are some topics you should discuss with your specialist and your primary care doctor:
Your HAE treatment plan
Talk to your doctor about an individual treatment plan. This plan should include how to prevent attacks, how to self-administer medication, and what to do in case of an emergency. You should also discuss details about coordinating care between providers.
Your symptoms can vary throughout your life. Your doctor can talk to you about what kinds of symptoms you can expect and how to handle new ones.
You’ll also want to talk about how you can track and monitor your symptoms to make sure your treatment plan is working.
Medication for treating HAE has advanced significantly in the last decade. According to the U.S. HAE Association, more people have been satisfied with their treatments in recent years and the number of emergency visits has decreased.
More people are also self-treating at home, giving them more independence to manage their HAE. With newer treatments and more possibilities for self-treatment, it’s getting easier to maintain a normal lifestyle. Talk to your doctor about the most current options for treating your HAE.
Your doctor can provide advice for avoiding situations or events that trigger attacks.
Since stress can trigger attacks, you may want to talk to your doctor about how to maintain a healthy daily routine with HAE. You may also want to discuss how to manage the emotional strain that can come with the condition.
The World Allergy Organization recommends certain vaccines for people with HAE. Since infections and illness can trigger attacks, you should be vaccinated against influenza every year. You should also receive hepatitis A and B vaccines since you could be treated with plasma-derived C1 inhibitor, which contains blood products.
Since some medications can trigger HAE attacks, be sure to talk to your doctor about possible side effects. Estrogen-containing birth control and ACE-containing blood pressure medications are known to trigger attacks. If you have high blood pressure, you will need to consider alternative medications. Women should also talk to their doctors about the best birth control options. Other triggers include aspirin, NSAIDs, and antibiotics.
If you know you’ll encounter a triggering event such as surgery or dental work, talk to your doctor so you can receive preventive medication. Also, communicate with the dentist or surgeon about what to do in case of an attack.
Since the hormonal shifts that come with pregnancy can affect HAE symptoms, it’s important to talk to your doctor if you’re planning on becoming pregnant. You may need to change your treatment plan since you’ll need to avoid certain HAE medications, such as androgens, during pregnancy or breast-feeding.
Genetic testing and counseling
Since HAE runs in families, your close family members should be screened for it too. Diagnosing HAE early can help avoid possible complications such as airway swelling.
Communicating with your doctor and attending regular appointments is an important part of treating HAE. Your doctor is the best source for information about managing your condition.