How to Navigate HAE at Work: Actionable Strategies to Protect Your Career and Peace of Mind

Even so, you can have a successful, fulfilling work life while managing HAE and maintaining your privacy.

Know Your Legal Rights: ADA, FMLA, and Privacy

The ADA and Accommodations

For someone with HAE, the impact on the ability to work depends on where the swelling occurs, says Evelyn Konsur, MD, an allergist and immunologist at Endeavor Health in Glenview, Illinois.

For example, she notes:

• Swelling in your hands, arms, feet, or legs may make typing, standing, walking, or completing physical tasks difficult.
• An abdominal attack can cause severe pain, nausea, vomiting, or diarrhea, which may require you to stop working temporarily.
• Facial swelling can make speaking or interacting with others uncomfortable. Throat swelling can block your airway and requires emergency care.

• Flexible hours or remote work during and after an attack
• Flexibility to use sick leave for attacks, recovery, and medical appointments
• Permission to keep on-demand medication nearby and the ability to access it quickly when needed
• A private, clean place to administer medication and rest during an attack
• Changes that reduce avoidable known workplace triggers

Intermittent FMLA Leave

• Have worked for your employer for at least 12 months
• Have worked at least 1,250 hours during the previous 12 months
• Work at a location where your employer has at least 50 employees within 75 miles

Protect Your Privacy: What You Do (and Don’t) Have to Share

The human resources (HR) department may need certain details to review your request and arrange accommodations, but that doesn’t mean you have to give up your privacy, says Heather Willison, NP, a nurse practitioner who works with asthma and allergy patients at Parkview Health in Auburn, Indiana. You don’t have to tell your coworkers about your condition or explain your full medical history to your manager, she notes.

Talk to HR and Your Manager

To request accommodation:

• “During an attack, swelling may make it difficult for me to work on-site. I’d like to request the option to work remotely when my symptoms allow.
• “I’m having trouble getting to work on time because of medical treatments.”
• “I may need a few days off with little notice for a medical flare-up.”

5. Make a plan with your manager. After approval, you and your manager may need to sort out logistics, like changes to your schedule or coverage during an absence, Willison says, “But keep in mind that not every detail needs to be shared with management.”

Create a Flare Kit for the Office

Keeping a flare kit at work can help you act fast and relieve some of the worries about having an HAE attack on the job. Because every treatment plan is different, stock your kit based on the plan you created with your HAE specialist, says Leonard Bielory, MD, an allergist and immunologist in private practice in Springfield, New Jersey, and a professor at the Hackensack Meridian School of Medicine.

Your Medication

Your prescribed on-demand treatment is the core of your kit and should remain accessible throughout the workday, says Konsur. She recommends the following.

• Keep at least one full dose in your kit, ideally two, since you may need to administer a second dose.
• Include supplies like syringes, alcohol swabs, and a sharps container, if needed.
• Keep your medication in its original packaging and follow its storage instructions, including any temperature or light-protection requirements.
• Check expiration dates regularly and replace the medication promptly after using it.

Your Action Plan and ID

Work with your HAE specialist to create a short, written action plan that includes your diagnosis and treatment, Konsur says. Keep a copy where anyone designated to help you during an attack can access it, and another in your kit.

These documents can guide anyone helping you during an attack. Konsur and Dr. Bielory recommend that your action plan indicate clearly:

• Where your medication is stored and how to get to it quickly
• How to use your treatment and when another dose may be needed
• What someone should do if you can’t administer the medication yourself
• When to call 911, such as for throat or tongue swelling, voice changes, trouble swallowing, or difficulty breathing

Store your kit in a discreet bag or container that you or anyone helping you can reach quickly, Bielory says.

Choose a Coworker Who Can Help

Dr. Owens suggests choosing one trusted coworker or supervisor who can be trained to help if an attack occurs. If you choose a workplace helper, consider giving them a copy of your action plan. You may want to consult HR or management before making this request to ensure you’re on the same page and understand your rights.

She recommends telling them:

• Where the kit is and what’s in it
• How to retrieve your medication and follow your action plan
• The airway red flags, and when to call emergency services
• Who to contact on your behalf