Although hereditary angioedema (HAE) emergencies occur in less than 1 percent of all attacks, approximately 50 percent of people with HAE will experience an emergency attack at some point during their lifetime. Having an emergency plan can help ease your concerns about what to do in case you need emergency care.
Here’s more on HAE emergency planning that you can discuss with your healthcare team and HAE specialist.
HAE attacks that cause swelling in the face, tongue, or throat can quickly cause restrictions in the airway, which is an emergency. Early signs of HAE emergencies include problems with swallowing, difficulty breathing, and changes in someone’s voice.
Even if you have HAE medication on hand, any swelling that affects your breathing and any early signs of an attack affecting your throat are always considered medical emergencies and require immediate medical care.
HAE attacks can start on one part of the body and spread to another location. With this in mind, it’s important to be aware of changing symptoms that may indicate swelling in the face, tongue, or throat.
On-demand medications are taken at the first sign of any HAE attack and should be handy at all times. On-demand HAE treatments can be self-administered to stop attacks or make them less severe. These medications include:
Ask your healthcare team any questions about using your on-demand HAE medication.
In case of an HAE emergency, you need to know which hospitals are closest and which ones are prepared to treat people with HAE.
HAE is a rare condition, and many doctors don’t have experience with it. Swelling in HAE can look like other medical conditions, such as an allergic reaction. However, an HAE attack can’t be effectively treated with allergy medication such as antihistamines, corticosteroids, or epinephrine.
Your HAE specialist can provide you with information about appropriate emergency rooms (ERs) for your condition. You can also contact hospitals directly to ask if they have appropriate HAE medication for an emergency attack.
It’s good to know which hospital ERs treat HAE emergencies near your workplace and near your home. Likewise, if you’re traveling, take time ahead of your departure to find ERs that treat HAE in the areas where you’ll be.
Keep an emergency card in your wallet. An emergency card — sometimes called a medical ID — provides vital information to first responders and emergency medical personnel. It should include information such as:
Your doctor can help you fill out your emergency card to make sure that all information is accurate. You can download a template for an emergency card, which is available in different languages. This can be useful when traveling internationally.
Always carry a physical copy of your emergency card with you, in case you lose consciousness or have trouble communicating during an HAE emergency. You can also keep a digital copy in your mobile phone.
It’s important to share your HAE emergency plan with close family members, caregivers, and other people who are frequently around you, such as a workplace supervisor or school nurse. They may need to help during an emergency and should know what to do.
You can create a document that has information that’s similar to your emergency card. Review any document you create with your HAE healthcare team, or ask them for help in creating an emergency plan document.
You may be able to avoid some triggers that cause attacks of swelling. But sometimes you may be exposed to known triggers beyond your control. In those cases, you can plan ahead for potential HAE attacks.
Keep in mind that HAE is unpredictable. It isn’t always possible to avoid an attack, even when taking precautions.
Medical and dental procedures are common triggers for HAE attacks. If you’re scheduled for a procedure, you can talk to your doctor about taking short-term prophylaxis (preventive medication) that can help prevent an attack.
For dental procedures, particularly tooth extraction or dental surgery, preventive medication has been found to significantly reduce the risk of HAE attacks.
The risk of HAE attacks also increases with medical procedures, depending on how invasive the procedure is. Your HAE specialist will determine the best approach to preventive medication based on the particular medical procedure you’re having.
Physical and emotional stress are known to trigger HAE attacks in some people. You may experience situations in either a workplace or at school that require physical activity that is a potential trigger. Situations can also arise at a job or school that cause emotional stress.
It can be helpful to talk to your workplace supervisor about the possibility of accommodations for any physically demanding or stressful aspects of your work. To address physical or emotional stress at school, you can talk to administrators about accommodations.
For either situation, it’s good to talk to your doctor about preventive HAE medication. If you experience frequent or severe attacks, your doctor may recommend long-term preventive medication. This type of medication is taken regularly to help prevent HAE attacks.
Living with HAE alongside the stresses that come with daily life can feel overwhelming. Adequate stress management may help reduce HAE attacks and prevent an HAE emergency.
Relaxation techniques such as breathing exercises, writing your feelings in a journal, practicing mindfulness and meditation, and spending time outside in fresh air can help reduce emotional stress. You can also talk with your doctor about a referral for mental health counseling if you need help managing stress, anxiety, or depression.
On myHAEteam, people share their experiences with hereditary angioedema, get advice, and find support from others who understand.
Have you talked to your doctor about your HAE emergency plan? Let others know in the comments below.
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