Directions for the journey: What helped us navigate HAE

Last updated July 22, 2025, by Danita LaShelle Jones

Every year, the organization I work for travels to a city in the U.S. for two weeks to run a series of meetings. Since we’re not in our hometown, the only way we can navigate the city is with our trusted GPS. Sometimes, if we go the same way often enough, we can function without it. Usually, we strive for that.

This year, however, proved to be a challenge. Since the moment we arrived in our current city, we’ve had to rely heavily on GPS. At first, we chalked it up to the fatigue of travel, but by day four, it became painfully obvious that without GPS, we would be hopelessly lost.

Interestingly, our situation immediately reminded me of what it’s like when attempting to navigate a hereditary angioedema (HAE) diagnosis on your own.

When our daughter, whom we lovingly nicknamed Ladybug, was diagnosed with HAE, I attempted to navigate it with little to no help. Although her doctor tried to provide resources for our family and offered to be on call for us whenever we needed, I rebuffed the help. I figured that with enough reading and studying, we would be able to find our way.

I was so wrong.

There are so many things I wish I’d known or done. Now, when I meet a caregiver or someone newly diagnosed with HAE, I offer my own set of directions that help them navigate HAE a little more easily.

After the initial diagnosis, connect with the HAE community

For such a rare disease, there’s a fantastic community of people all over the world that knows exactly what you’re going through. Whether you connect with them through social media or find them in places like the US Hereditary Angioedema Association’s website, haea.org, these people understand the ins and outs of your journey from every perspective.

Write or log everything

Do you have a question? Did a flare emerge out of nowhere? Do you suspect you found a new trigger or aren’t sure about dosages? Write or type it out. It’s more stressful to try to remember all of these things in the doctor’s office, especially during a not-so-great health month.

Unapologetically demand to be seen and/or heard

Often, after a recent diagnosis, when arriving at an emergency room, a new specialist’s office, or even the dentist, you may be afraid (or too exhausted) to launch into an explanation about what’s going on. Don’t be. Patients’ rights are a thing; HAE is unique, and it can manifest differently in each person. No one can advocate for you or your loved one better than yourself.

Don’t let the disease define you (or your loved one)

The worst mistake we made when Ladybug was diagnosed was identifying her as the kid with HAE. She was still a dancer, loved to knit, and was a great swimmer, but we let the disease overshadow that. I finally learned the best way to thrive is to remember the person who exists outside of the disease and concentrate more on who that person is.

The beauty of these tips is that they work even if you’re years into your diagnosis. Even if you’ve been navigating your HAE journey without this list, use it like the GPS in our cars, to help re-route you in the right direction.

Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.