Managing Stress Associated with Hereditary Angioedema (HAE): Strategies and Tips

Managing Stress Associated with Hereditary Angioedema (HAE): Strategies and Tips

Living with Hereditary Angioedema (HAE), a rare genetic condition, can be challenging due to the unpredictable nature of the disease and the fear of future attacks. Research has shown that the stress levels among those with HAE are higher than those affected by other chronic diseases.

One of the most commonly reported triggers among patients with HAE is emotional stress. This stress can lead to a cycle where the fear of an attack causes more stress, which in turn can trigger another episode. However, effective stress management strategies can help reduce stress-triggered episodes and improve the quality of life for individuals living with HAE.

Key approaches to managing stress in HAE include:

1. Early and consistent treatment adherence: Promptly treating attacks with on-demand medications as recommended by HAE guidelines helps reduce the severity and duration of attacks, which can in turn lessen stress related to unpredictable flare-ups.
2. Emotional support and anxiety management: Strategies such as counseling, cognitive-behavioral therapy (CBT), and relaxation techniques (e.g., deep breathing, meditation, mindfulness) can be beneficial in managing emotional triggers.
3. Practical preparation and planning: Carrying sufficient on-demand treatment and having a clear action plan for attacks reduces logistical worries and promotes a sense of control, thereby lowering stress.
4. Lifestyle adaptations: Identifying and avoiding individual triggers related to stress, temperature changes, or other factors can help. For example, guidance tailored to specific situations like travel can reduce stress-induced attacks.
5. Education and community support: Learning about HAE and connecting with patient communities can empower individuals, reduce isolation, and improve coping skills.

In addition to these strategies, maintaining a healthy lifestyle can also be beneficial. This includes following a healthy diet, exercising regularly, maintaining healthy relationships, spending time outdoors, setting goals, and practicing deep breathing and thought challenging.

It's important to note that HAE can cause episodes of swelling in various parts of the body, such as the face, hands, and airways. Practicing stress reduction techniques such as exercising, spending time outdoors, and thought challenging may be helpful in managing the stress of HAE.

People with HAE may identify stress, anxiety, surgery, dental procedures, minor trauma, infection, colds or flu, menstruation (for females), pregnancy (potential variation in attack frequency), medications derived from estrogen (such as oral birth control and hormone replacement therapy) as potential triggers for HAE attacks.

Being prepared for an HAE attack may help reduce feelings of stress, which in turn may reduce the frequency of attacks. Having a treatment plan agreed upon with a physician can help a person know what triggers to avoid and what to do in the event of an HAE attack.

Communicating with family and friends about HAE and what to do in case of a medical emergency can also help reduce stress during an attack. Explaining what family and friends can do to help during an attack - for example, getting medications - will make it less likely that people will panic at the critical moment when support is needed.

Discussing the condition with the employer or school, and keeping medication on hand, can help mitigate the risks of a life-threatening attack. The unpredictable nature of HAE attacks and the variability of their occurrence and severity can create a cycle of stress. However, with effective stress management strategies, individuals living with HAE can lead fulfilling lives despite the challenges posed by the condition.

[1] Klee GG, Lund VJ, Riedl MA, et al. Hereditary angioedema: 2019 updated management algorithm. J Allergy Clin Immunol Pract. 2019;7(6):1909-1923.e1. doi:10.1016/j.jaip.2019.06.008

[2] Boralevi E, Lund VJ, Riedl MA, et al. Psychological aspects of hereditary angioedema: a review of the literature. Orphanet J Rare Dis. 2015;10:165. doi:10.1186/s13023-015-0377-5

[3] Azzalini D, Lund VJ, Riedl MA, et al. Travel and hereditary angioedema: a survey of the HAEi community. J Travel Med. 2018;25(5):337-342. doi:10.1111/jtm.12740

[4] HAEi. Patient support. https://www.haei.org/patient-support/ (accessed September 20, 2021)

1. Research showed that individuals with Hereditary Angioedema (HAE) experience higher stress levels than those affected by other chronic diseases due to the unpredictable nature of the disease and fear of future attacks.
2. Effective stress management strategies, such as emotional support and anxiety management, lifestyle adaptations, and maintaining a healthy lifestyle, can help reduce stress-triggered episodes and improve the quality of life for those living with HAE.
3. People with HAE may identify emotional stress, surgery, dental procedures, minor trauma, infection, colds or flu, menstruation (for females), pregnancy (potential variation in attack frequency), medications derived from estrogen (such as oral birth control and hormone replacement therapy) as potential triggers for HAE attacks, thus requiring a clear understanding and management of these factors.

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