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Hereditary angioedema (HAE) is a genetic condition that causes swelling, typically of the face, hands, feet, digestive tract or throat. About 1 of every 50,000 Americans are impacted. Attacks are not related to allergies, and generally occur every few weeks; they can be mild to serious and last up to five days. You may experience pain, nausea and vomiting if your intestines are affected—and if the swelling blocks your airways, these episodes can be fatal.
Though random gene mutations cause HAE in about 25 percent of patients, it's usually passed down through families. If one parent has the condition, there's a 50/50 chance their child will have it, too. Even though about two-thirds of people with HAE see symptoms by age 13, it often takes years to identify the disease.
Once you've been diagnosed, however, you can learn to quickly address attacks—and possibly save your life. Here's how.
Creating a treatment plan
First, you and your doctor should devise a personalized treatment plan for your swelling episodes. Since the disease varies greatly from person to person—even if they're members of the same family—it's crucial the strategy be customized to you. Specific action could prevent serious complications and help you get back to your regular life faster.
A key part of your plan should be medication to quickly reduce swelling once an acute attack begins. Be aware that antihistamines, like those used for allergic reactions, won't work for HAE. Instead, there are currently several drugs available for this purpose; they can be administered at home, either via injection or intravenously. People with HAE are advised to have at least two doses handy.
When you and your doctor discuss these meds, make sure to review the following:
- What's the correct dosage?
- How is it taken?
- Where will you keep your medication?
- Do you need anyone to help administer it?
During an attack, if your symptoms become severe or interrupt your breathing, seek medical help at once after taking your medication. It's a good idea to have a medical history or file about your condition on-hand for just such an occasion, so you can hand it to emergency personnel who might be unfamiliar with HAE.
Sometimes, drugs can be prescribed to reduce your number of episodes, though they may be prohibitively expensive. Discuss with your doctor if this is an option.
As part of your treatment plan, you should check in with your doctor regularly, regardless. This will help you both keep track of your HAE, which can evolve as time goes on. Keep good notes about changes in symptoms, the effectiveness of your medication and any side effects you observe. When you meet, come ready to talk details.
Watch for triggers
Along with a treatment plan, people with HAE can keep an eye out for things that set off attacks. Though episodes can happen at any time without a triggering incident, some patients report they're incited by:
- Stress and anxiety
- Physical exertion
- Illnesses and infections
- Small injuries
- Minor surgeries, including dental procedures
- Certain medications, like ACE inhibitors and birth control
- Hormone changes, including those during pregnancy and menstruation
If you know you have an event coming up that could set off swelling—say, a root canal—talk to your doctor about how to prepare.
Ultimately, for people with hereditary angioedema, the best offense is a good defense. A solid plan, the right medication and some careful observation will go a long way to keeping you healthy. And if you're still worried? Try these resources for support and information.
