Can we talk? Tips for discussing HAE with your doctor

Last updated Aug. 22, 2024, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Whether you have hereditary angioedema (HAE) or are caring for someone with the condition, feeling comfortable talking to your HAE doctors may help you get the best care possible.

It also makes discussing HAE with your doctor less stressful and more productive.

Good communication allows your doctor to better understand how your condition is affecting you so they can create a personal treatment plan that adapts to your changing needs.

Your HAE treatment may include both prevention and management of swelling attacks as well as other HAE symptoms.

Preparing for your doctor’s appointment

You want to do your best to get what you need at each appointment with your HAE doctors.

Start by preparing ahead of time questions to ask your doctor. Before each visit, think about your healthcare goals and what you want to say. Perhaps you want to share additional information about your family’s health history, go over treatments for HAE management, ask questions about raising a child with HAE, or learn more specifics about your HAE diagnosis.

Make a list of questions or concerns, so you won’t forget anything important during your appointment.

You should also keep track of your symptoms from day to day, including the frequency, severity, and duration, as well as noting possible triggers. By sharing this information, your doctor can understand your condition better and how to manage it more effectively.

Consider asking a family member or friend to go with you to the appointment. They can help you stay focused on your goals and process the information with you afterward, especially if you feel overwhelmed.

If possible, either you or the person accompanying you should take notes during the appointment or you can ask your doctor if you can record the conversation.

Discussing symptoms and concerns

Your HAE healthcare team can give you advice on how to identify and avoid your triggers, manage your symptoms, and recognize when there is cause for concern.

Your HAE triggers might include trauma, viral infections, stress, or having a medical or dental procedure such as surgery. Or you might react to allergens or hormonal fluctuations. Even repetitive physical activities can trigger swelling attacks in some people.

By making lifestyle changes and being careful with certain medications, you may be able to avoid some of your HAE triggers.

For example, discuss with your doctor how certain high blood pressure medications, such as ACE inhibitors, can increase the frequency or onset of HAE attacks and may need to be avoided.

Women with HAE might want to avoid estrogen-containing oral contraceptives and estrogen hormone replacement therapy. Consider asking your doctor whether using progesterone-only pills for hormonal contraception would be a better option.

You may be concerned about what to do in a health emergency. Swelling in the throat is generally the most serious type of attack, as it can affect your ability to breathe. Ask your doctor to review what steps to take, such as carrying and using treatments for attacks. Your doctor can also guide you in creating an action plan for emergencies, which may include knowing the location of nearby hospitals.

Treatment planning

Sharing your goals with your doctor makes you an active participant in planning your HAE treatment. Together, you and your HAE healthcare team can identify and address your needs by talking about options for managing HAE.

Start by discussing symptom management, such as preventive treatments, how to deal with nonswelling symptoms, and what you should do when recovering from an attack.

This might include:

knowing your early warning signs of an attack
using reminder apps for taking HAE medications regularly
putting together an HAE kit for when an attack occurs that includes medication to stop the attack and injection supplies.

Improving communication

Healthcare professionals sometimes use complicated medical terminology, such as when they’re explaining HAE causes, triggers, and treatments.

Don’t be embarrassed to ask questions or request clarification. You need to fully understand the information being discussed.

Be honest with your doctor about your symptoms and reactions to treatment. Living with HAE can be challenging, but open communication can help you get the support and care you need.

Managing HAE effectively means knowing as much as possible about preventing, triggering, and treating swelling attacks.

Some questions you may want to ask to get more in-depth knowledge include:

What should I do if my symptoms get worse or change unexpectedly?
How can I reduce stress in my life if it seems to be a trigger?
What other lifestyle changes should I make to avoid triggers?
How can I handle hormonal changes and avoid triggering HAE attacks?
What should I do to help my emotional well-being and feel more in control of my condition?
How can I travel and manage HAE?
How can I help my skin recover from swelling episodes?
What can my family or caregivers do to help me manage my HAE?
Is there an online portal for communicating with my HAE healthcare team or can I send text messages if I have questions or concerns?

Angioedema News can help you stay up to date about the latest HAE treatments, learn how to better navigate HAE, and improve daily life with HAE.

If you still have questions at the end of your appointment or are uncertain about the direction of your treatment, don’t hesitate to request additional appointments. These follow-up visits can provide more time to address your concerns and ensure you’re comfortable with your treatment plan.

Seeking a second opinion

There may be times when you want to get a second opinion about your HAE treatment.

Perhaps you are unsure about your current HAE treatment plan, or whether your symptoms are improving as expected. You might be considering new or experimental treatment options for angioedema, such as gene therapy for HAE.

Seeking a second opinion can provide you with additional perspectives, confirm your current approach, or introduce new strategies that might be more effective for your specific situation. Let your doctor know you would like a second opinion to explore all possible options and make the most informed decisions about your care.

Your doctor may be able to recommend specialists or clinics experienced in treating HAE.

Keep your original doctor informed about what you’ve learned and discuss any new recommendations in your treatment plan.

Advice for the newly diagnosed

If you or your child are newly diagnosed with HAE, you may be feeling overwhelmed and uncertain about what the future may bring.

Connect with the HAE community and patient advocacy organizations offering support groups and other resources. Support groups can offer advice and shared experiences, and give you a sense of community by speaking with others who are living with this rare disease.

Patient advocacy organizations include:

Good mental health is just as important as your physical health. You might wish to talk with a therapist or counselor about ways to manage stress, anxiety, or other emotional challenges you are facing. Always remember you’re not alone and emotional support is available.

Your family is another important resource. Educating your family members and close friends about HAE helps them understand your condition better, which means they can support you when you need help.

Other first steps after an HAE diagnosis might include:

educating yourself about HAE by talking with your healthcare team and reading articles by reliable sources in the HAE field
keeping up with news about HAE, including reading columns written by people living with HAE at Angioedema News.

Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.