Working With Your Doctor

Make a contract with your doctor

One productive strategy to help you and your physician manage your hereditary angioedema (HAE) 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:

Physician

What the physicians should do

Maintain a detailed history of HAE attacks:

  • Trigger
  • Location
  • Frequency
  • Duration

Be informed and mindful of health conditions.

Ask patient about other family members with HAE.

Agree with patient on plan for pain medication.

Provide a letter of diagnosis to be shown to the hospital ER. Click (here)

Patient

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.

Make sure you have a family member, friend or spouse who is aware of your condition and will look 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, contact the U.S. Hereditary Angioedema Association (HAEA). See how to get a referral from the HAEA