Working With Your Doctor

Make a contract with your doctor

One of the productive strategies to help you and your physician manage your hereditary angioedema (HAE) most effectively is to make a contract. To do this, you and your doctor outline a simple list of responsibilities, and also make a commitment to open and consistent communication.

An effective contract is based on:

  • Respect for and trust in one another
  • Clear expectations
  • Open communication
  • Commitment and compliance

Some simple suggestions for the responsibilities of each party are as follows:


What the physicians should do

Maintain a detailed history of HAE attacks:

  • Trigger
  • Location
  • Frequency
  • Duration

Be informed and mindful of health conditions.

Know about other family members with HAE.

Have an agreement on pain medication.

Provide a letter / patient information card which includes the diagnosis and which treatments you should receive in the ER in the event of an attack. Click (here)


What the person with HAE should do

Keep a detailed record of HAE attacks:

  • Trigger
  • Location
  • Frequency
  • Duration

Tell your physician about any changes in medication or any planned surgeries or dental procedures.

Make healthy lifestyle and food choices.

Be aware of mood changes.

Know your prodromal symptoms (early HAE attack warning signs).

Get to a hospital when necessary. Have someone who will watch out for you.

Drink plenty of (nonalcoholic and caffeine-free) beverages to replace fluids lost to swelling.

During painful attacks, take pain control medications early.

Notify your doctors, dentists and your child's school personnel using these customizable letters. Click (here)

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Talking to your doctor

The more information you can give to your doctor, the better. If your doctor thinks you have HAE, there are blood tests that can confirm it. Learn more about talking to your doctor.

Finding a specialist

Your physician may refer you to a specialist in HAE. To locate a specialist, you may want to contact the Canadian Hereditary Angioedema Network of physicians.