How to Manage the Stress of Hereditary Angioedema

Hereditary angioedema (HAE) not only causes swelling and discomfort; it also brings uncertainty into daily life. This rare genetic disease causes sudden, unpredictable, uncomfortable and sometimes even life-threatening swelling when it affects the airways. The unpredictability of HAE can lead to stress, and many experts suggest that stress or anxiety is a contributing factor to HAE attacks. “Stress can trigger episodes and create a vicious cycle of anxiety and other crises, negatively impacting quality of life,” says Yael Gernez, MD, PhD, clinical associate professor of pediatrics in immunology and allergy at Stanford Medicine. Observational data shows that periods of increased stress – such as during the COVID-19 pandemic – are linked to increased seizure frequency, Dr. Gernez says. causes HAE attacks,e60dc2a1-f33c-4a05-9b50-8e3e8e597629a9f07e1e-dbdd-44ef-aec1-75637cf38546 developing strategies to cope with daily and HAE-related stress can help you feel less stressed and more in control. How does stress cause angioedema (swelling)? How Stress Leads to Swelling It begins when emotional or mental stress triggers the body’s alarm system, the same way it would respond to physical danger, which can start a chain reaction: stress-related chemicals are released. Stress hormones like cortisol and adrenaline are released into the body’s organs, causing inflammation. Blood vessels become more sensitive. Stress can cause small blood vessels to become leaky, or “leaky,” which can pave the way for swelling. The body produces more bradykinin. This is the chemical that causes HAE to swell, and stress can intensify its effects. C1 inhibitors can’t keep up. This protein, which normally helps control inflammation, is low or doesn’t work properly in people with HAE, and stress makes it even more difficult to control the swelling. An HAE flare-up begins. Swelling develops in the skin, abdomen or airways. The attack causes psychological stress. The pain and disruption caused by swelling adds more stress, which can make future attacks more likely. What Makes HAE Stressful One of the most difficult aspects of HAE is that it is unpredictable. Attacks can appear suddenly, without clear warning. This uncertainty creates a constant undercurrent of worry. The swelling caused by HAE can cause stress, pain, and even a life-threatening health crisis. Visible swelling of the eyelids, lips, hands, and genitals can cause temporary disfigurement and social embarrassment. Swelling of the gastrointestinal (GI) tract can lead to nausea, vomiting, diarrhea, and abdominal pain. Swelling of the mouth, throat, tongue and airways can lead to problems swallowing and even breathing. When breathing is restricted by swelling, it is a life-threatening emergency that requires immediate medical attention. stress, and living with the uncertainty of when the next attack will occur is also stressful – a triple whammy. few instant tools can help calm your body before it turns into a trigger. Here are some stress-relieving methods to try: Deep breathing Simple techniques like the 4-7-8 method (inhale for 4 seconds, hold for 7, exhale for 8) can quickly reduce tension and help short-circuit the stress response. Gentle stretches or yoga Moving your body in a slow, controlled manner can relieve muscle tension and divert your attention from worry. Mindful Moments Even a few minutes spent focusing on your breathing or observing 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 toolkit to calm you down during stressful times. Long-Term Stress Management Strategies Long-Term Stress Management While it’s important to have the tools to manage 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 daily life: Practice mindfulness or meditation regularly. Mindfulness and relaxation practices have been shown to reduce stress and could theoretically reduce the frequency of attacks in people with HAE. Connecting with other people living with HAE can ease feelings of isolation and provide practical tips for coping. Support groups can also provide a safe space for you to talk about the emotional side of dealing with a rare disease. Try psychotherapy. Professional counseling may be especially helpful if you suffer from anxiety, depression, or the added emotional burden of HAE. Therapists can offer coping tools that fit your life. Stay physically active. Exercise is a natural way to reduce stress and can help improve sleep and mood. Gernez notes that physical activity should be tailored to your individual needs, with input from your healthcare professional. Prioritize sleep. Poor sleep can make stress worse and make you less equipped to handle flare-ups. Building a regular sleep routine supports your physical and emotional health. Follow a balanced diet. Nutrition plays a role in stabilizing your body’s response to stress. A diet rich in whole foods, lean proteins, and fruits and vegetables can support resilience. Identify and treat chronic stressors. Often the biggest sources of stress don’t come out of nowhere. Ongoing problems such as work stress, relationship problems or financial pressures can contribute greatly to chronic stress. Identifying these areas and taking steps to address them can make a significant difference to your long-term health. How to Seek Your Doctor’s Help to Reduce Stress How Your Doctor Can Help You don’t have to deal with stress and HAE yourself. Talk to your doctor about what steps you should take if you feel an attack is coming. Having a plan in place that you are willing to execute can go a long way toward relieving any anxiety about future episodes. Your provider can also help you with: Education and early recognition Work with your provider to recognize the early signs of swelling (especially airway involvement) and to know what to do when this occurs. Self-administration of treatment Learn to administer the appropriate medications on demand, by injection or infusion if necessary, at the start of an attack, without resorting to emergency services. on-demand HAE treatments during stressful situations are crucial for safety,” says Gernez. Carrying out 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, can reduce seizures and improve quality of life. Working in partnership with your doctor on a clear treatment plan and having medications available on demand can ease anxiety and help you feel more in control.