In the past, people with hereditary angioedema (HAE) often suffered through attacks and scaled back their lives to accommodate the condition. Today, treatment options that reduce the severity and frequency of HAE flare-ups mean you can take control of your life. With the right treatment plan you can continue to work, study, and play as you choose.
Here are seven tips for managing HAE.
Tip 1: Make a plan
A treatment plan is key to maintaining your quality of life and protects you from life-threatening symptoms of HAE. A doctor experienced in HAE will work with you to develop a plan that:
- meets your needs for treating HAE
- provides logistics for delivering treatment
- includes details about coordinating care between providers
If you’re self-administering HAE medication, your plan will also include:
- knowing where your medication is
- knowing how to use that medication
- knowing what to do if you need emergency help
It’s also important to have a backup plan in case of an attack that leads to throat swelling. That plan should include making sure you always have enough medication if you use on-demand treatment, and knowing how to get to the nearest emergency room.
If you’re traveling, having a plan for managing your HAE will ease your mind and help you address an attack right away. Before going on a trip, make sure you take your medication in your carry-on luggage and bring information with you about your condition and your treatment. You should also locate medical clinics and hospitals in the area so that you know where to go if the attack becomes too severe to manage. Finally, make sure you have enough medication when you return home.
Tip 2: Keep a journal
Keeping track of your attacks can help you identify and avoid events that trigger HAE symptoms. An electronic or paper log of your attacks will also help your doctor monitor your treatment. Your doctor can help you decide what you need to track. Some common things to track include:
- what you were doing before the attack
- how you felt before the attack
- how severe the attack was
- how you treated the attack
Tip 3: Anticipate triggers
While HAE attacks often lack a clear cause, certain activities or events are known to cause attacks. Some common triggers include:
- emotional stress
- dental work
- certain repetitive physical activities
If you can’t avoid an HAE trigger, you may be able to manage it by anticipating the need for treatment. For example, if you’re undergoing dental surgery, you can take preventive medication before the appointment. You can also have a plan for delivering on-demand treatment as a backup.
Tip 4: Get organized
Developing an organizational system and daily routine will help you meet your goals and prevent stress-triggered HAE attacks. Creating a daily to-do list, for example, will help you set realistic objectives and avoid becoming overwhelmed. A longer-term list will encourage you to pursue big life goals. Creating a daily routine will help you maintain a healthy lifestyle and get back on track if you have an attack.
Tip 5: De-stress
Since emotional stress is a trigger for HAE, learning how to manage it can help prevent attacks. Yoga, deep breathing, meditation, and exercise are all healthy habits that can calm your anxieties.
Tip 6: Create a support system
Let your close friends and family know about your HAE, how it works, and what they can do to help if you have an attack.
Tip 7: Advocate for yourself
If your treatment plan isn’t meeting your needs, let your doctor know. Make sure you see your doctor at least once a year, or more, depending on your condition.
With help from your doctor, you can develop a treatment plan that will let you lead a normal daily life.