Tips for Managing HAE

“Having HAE isn’t something I’d have chosen for myself, but I don’t have to let it rule my life.”

Lesa — Diagnosed with HAE in 1980

Discover tips for managing life with HAE

Living with hereditary angioedema (HAE) isn’t always easy. An HAE attack can be more than an interruption in your daily routine. It can be physically and emotionally painful, sometimes scary and even potentially life threatening. But having a management plan in place could help you restore a better quality of life.

Have a plan in case of an emergency

HAE emergency plan

Fifty percent of people with HAE will have an attack of swelling in their throat at least once in their lifetime. Because throat attacks put you at risk of suffocation and can be life threatening, everyone with HAE should have a plan in place in case of this emergency.

Talk with your doctor about what to do in an emergency and make sure you share the information with the people you’re around most. They may need to help you take the necessary steps.

You should know where the nearest emergency room is and how to get there. It can also help for you to contact the hospitals in your area and notify them of your condition so they will be familiar with HAE should you need urgent care.

Keep a journal

Many people living with HAE find it helpful to keep track of their HAE attacks. Consider keeping a journal to help:

  • Identify the triggers of your attacks. When you keep details about what you were doing, eating and feeling before an attack, you can look for similarities among the episodes.
  • Communicate with your doctor. Having a record of the severity and location(s) of your attacks gives your doctor a way to assess and adjust your treatment plan.

Be prepared when you travel

Traveling with HAE

Whether you’re taking a trip for work or fun, it’s a good idea to be prepared for any curveballs HAE might throw. Here are some things to keep in mind when traveling:

  • If you are using medication to treat your HAE, make sure to pack enough for your whole trip.
  • If you're flying, it's a good idea to get in touch with the TSA to make sure you know the most current rules on flying with medication. You might also consider bringing a doctor’s note to help explain your condition if you’re questioned by airport security.
  • In case of an emergency, make sure you know where the nearest hospitals and emergency rooms are in the area where you’ll be traveling.
  • If you should happen to need medical attention while you're out of town, it's a good idea to bring information about HAE along with you in case you need to explain it to a doctor who is unfamiliar with the condition. It's also a good idea to keep your Medical ID and insurance information handy.

Talk with people about your condition

Of course, your health information is a personal matter, but consider telling your close friends, family and coworkers that you have HAE. Have an open and honest conversation with them so they know how to support you and what steps they should take in case of an emergency.

Hereditary angioedema digital awareness kit

Want help explaining HAE? You can download and print the information in our Digital Awareness Kit.

Build a support network

You don’t have to face life with HAE alone. You can attend conferences, join groups online and start making connections with other members of the HAE community. Explore ways to meet others now.

Use stress management techniques

There are some well-known techniques that can help improve your general level of stress. Find out what works for you and try to make it part of your daily routine.

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