Some of the information provided by Heather Willison, NP, Allergy and Immunology, previously appeared in Everyday Health, How to Navigate HAE at Work: Actionable Strategies to Protect Your Career and Peace of Mind.
Managing a chronic illness doesn't stop when you clock in, especially with an unpredictable condition like hereditary angioedema. For some, staying healthy may require extra support and flexibility at work.
How can hereditary angioedema (HAE) affect a person’s ability to work during an attack and in the period afterward?
HAE is a genetic condition characterized by episodes of swelling, often called HAE attacks. The episodic swelling associated with HAE can reduce productivity, leading to missed days or the need to leave early.
It can affect any part of the body, and when an exposed area swells, co-workers may notice, which can attract unwanted attention. This can make the person with HAE feel awkward, even when well-intended.
However, swelling can also affect the airways or digestive system and may not be apparent to others. Depending on the severity and location of the swelling, it can be very uncomfortable and may compromise breathing, creating an emergency.
What workplace adjustments may help someone manage HAE while continuing to perform their job?
Whenever possible, flexible scheduling is important for people managing HAE at work. This may include providing time off for medical appointments, ongoing treatments or when attacks occur. Remote or hybrid work arrangements may also be beneficial.
Other needed workplace adjustments depend on what activates HAE attacks. Potential triggers may include:
- Physical or emotional stress
- Physical activity
- Some medications like ACE inhibitors and hormone replacement therapy
- Hormonal changes
Some attacks can be initiated by pressure. This often occurs when an individual stands for long periods or constantly grips tools. For example, hairstylists typically spend many hours on their feet or holding a hairbrush or scissors, which can contribute to this type of discomfort. For individuals working in similar environments, frequent periods of rest can be crucial to minimize their reactions.
If emotional stress is a trigger, a remote or hybrid arrangement may best support individuals who need a quieter, more private work environment.
How can a person with HAE discuss their needs with human resources or a manager at work while maintaining their medical privacy?
Due to the potential for HAE attacks to become life-threatening, those living with HAE can experience significant anxiety about their condition. This may make it difficult to share what they are experiencing with others.
However, human resources must be informed when an employee is managing HAE, so they can offer appropriate accommodations while maintaining privacy.
When requesting accommodations for any medical condition, employees will likely need to share certain medical information per the Americans with Disabilities Act (ADA). Most workplaces have a designated person within the human resources department that handles these requests. The ADA prohibits discrimination based on disability and requires confidentiality of medical records. Nevertheless, employees do not need to share every detail or their full medical history with their manager to receive accommodations. They can share that a health condition may affect their ability to work and that they may need schedule or environment adjustments to manage it while performing their duties.
How can someone work with their healthcare team to create a plan for managing an HAE attack at work?
HAE is managed with two types of treatment. All individuals with HAE should have an on-demand treatment that is available when swelling occurs. Both oral and injectable options are now available, and it is important to choose the option that works best for the individual. It is also important to recognize attacks early and administer the on-demand treatment as soon as possible.
Depending on the frequency of attacks, some individuals choose to be on preventative therapy as well. Preventive therapies have been shown to reduce attack frequency and severity.
What should someone keep in a workplace flare kit, and what should they consider when storing and accessing their medication?
U.S. Hereditary Angioedema Association recommends that patients keep at least two doses of their acute treatment accessible everywhere they go. Some on-demand treatment options may be stored at room temperature, but others must be refrigerated. This matters because the medication should be easily accessible during the workday. If so, employees should discuss this need with their human resources so they can offer a reasonable accommodation to ensure the employee can store their medication safely.
It is also beneficial to keep an updated list of emergency contacts and a personalized action plan in the flare kit to guide care if needed.
What guidance would you give someone who wants to prepare a co-worker or supervisor to help during a severe HAE attack while still maintaining their privacy?
Choose a trusted co-worker who can be trained to help manage an HAE attack. Make sure they know where the on-demand treatment is stored, how to administer it, when to call 911 if an attack has progressed, and how to reach any other emergency contacts who need to be notified.
This can give the employee peace of mind, knowing someone is in their corner if needed during an attack.
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Allergy, Asthma and Immunology focuses on diagnosing and treating allergies, asthma-related respiratory conditions and primary immunodeficiency diseases (PIDD). If you don't have an immunologist on your care team, speak to your primary care provider for a referral to PPG – Allergy, Asthma and Immunology.
