How to Manage the Stress of Hereditary Angioedema

Hereditary angioedema (HAE) doesn’t just cause swelling and discomfort; it also brings uncertainty to everyday life. This rare genetic condition causes sudden swelling attacks that are unpredictable, uncomfortable, and sometimes even life-threatening when they involve the airway.

The unpredictability of HAE can lead to stress, and many experts suggest stress or anxiety is a contributing factor in HAE attacks.

“Stress can initiate episodes and create a vicious cycle of anxiety and further attacks, negatively impacting quality of life,” says Yael Gernez, MD, PhD, a clinical associate professor of pediatrics in immunology and allergy at Stanford Medicine.

It begins when emotional or mental stress triggers the body’s alarm system, similar to how it would react to physical danger, which can trigger a chain reaction:

Stress chemicals are released. Stress hormones like cortisol and adrenaline get released into organs throughout the body, causing inflammation.

Blood vessels become more sensitive. Stress may make small blood vessels permeable, or “leaky,” which can set the stage for swelling.

The body produces more bradykinin. This is the chemical that drives swelling in HAE, and stress may ramp up its effects.

C1 inhibitors can’t keep up. This protein, which normally helps to control inflammation, is low or doesn’t work properly in people with HAE, and stress makes it even harder for it to control swelling.

An HAE flare-up begins. Swelling develops in the skin, abdomen, or airways.

One of the hardest parts about HAE is that it’s unpredictable. Attacks can appear suddenly, without clear warning. That uncertainty creates a constant undercurrent of worry.

The swelling caused by HAE can cause stress, pain, and even a potentially life-threatening health crisis.

• Visible swelling in the eyelids, lips, hands, and genitals can cause temporary disfigurement and social embarrassment.
• Swelling in the gastrointestinal (GI) tract may lead to nausea, vomiting, diarrhea, and abdominal pain.
• Swelling in the mouth, throat, tongue, and airways can cause issues with swallowing and even breathing. When breathing is restricted by swelling, it’s a life-threatening emergency and needs immediate medical attention.

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When you feel stress rising, having a few in-the-moment tools can help calm your body before it escalates into a trigger. A few stress busters to try include:

• Deep Breathing Simple techniques like the 4-7-8 method (inhale for 4 seconds, hold for 7, exhale for 8) can lower tension fast and may help short-circuit the stress response.
• Gentle Stretching or Yoga Moving your body in a slow, controlled way can relieve muscle tension and shift your focus away from worry.
• Mindful Moments Even a few minutes of focusing on your breath or noticing your surroundings without judgment can help reduce the immediate impact of stress.

These techniques won’t prevent all attacks, but they can be part of a tool kit to steady yourself in stressful moments.

While it’s important to have the tools to deal with stress in the moment, long-term stress management is essential for people with HAE, says Gernez.

She recommends the following habits to reduce stress in your day-to-day life:

• Practice mindfulness or meditation regularly. Mindfulness and relaxation practices have been shown to lower stress and could theoretically reduce attack frequency in people with HAE.

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• Join a support group. Connecting with others who live with HAE can ease feelings of isolation and provide practical coping tips. Support groups can also give you a safe space to talk about the emotional side of managing a rare disease.
• Try psychotherapy. Professional counseling can be especially helpful if you’re dealing with anxiety, depression, or the added emotional burden of HAE. Therapists can offer coping tools tailored to your life.
• Stay physically active. Exercise is a natural stress reliever and can help improve sleep and mood. Gernez notes that physical activity should be tailored to your individual needs, with input from your healthcare provider.
• Prioritize sleep. Poor sleep can worsen stress and leave you less equipped to handle flare-ups. Building a regular sleep routine supports both your physical and emotional health.
• Follow a balanced diet. Nutrition plays a role in stabilizing your body’s stress response. A diet rich in whole foods, lean proteins, and fruit and vegetables can support resilience.
• Identify and address chronic stressors. Often the biggest sources of stress don’t come out of nowhere. Ongoing issues such as work strain, relationship issues, or financial pressures can be big contributors to chronic stress. Identifying these areas and taking steps to address them can make a meaningful difference in your long-term health.

You don’t have to manage stress and HAE on your own. Talk with your healthcare provider about what steps you should take if you feel an attack coming on. Having a plan in place that you are ready to execute can go a long way in relieving any anxiety about future episodes. Your provider can also help with:

• Education and Early Recognition Work with your provider to recognize early signs of swelling (especially airway involvement) and to know what to do when that happens.
• Self-Administration of Treatment Learn how to give yourself the appropriate on-demand medication, by injection or infusion if necessary, at the start of an attack without relying on emergency departments.

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“Having access to on-demand HAE treatments during stressful situations is crucial for safety,” says Gernez.

• Stress is a well-known trigger for hereditary angioedema, and living with HAE can itself be a major source of stress.
• Quick-relief strategies like deep breathing, stretching, or mindfulness can help calm stress in the moment.
• Long-term practices, including mindfulness, exercise, good sleep, healthy eating, and psychotherapy, may reduce attacks and improve quality of life.
• Partnering with your doctor on a clear treatment plan and having on-demand medication ready can ease anxiety and help you feel more in control.