Travel plans for an HAE conference include caution

I was superexcited to hear that this year’s US Hereditary Angioedema Association summit is in Baltimore, as that’s my husband’s hometown. His family still lives in that area, and given his mother’s decline, we were planning a trip back east sometime soon anyway.

Even though my daughter Leah and I have hereditary angioedema (HAE), we’ve never attended the summit before. Leah, 22, is planning to participate in the youth program, and since she’s never been to any big national conference, that alone will be a new experience for her.

While I’m looking forward to seeing old friends, our newlywed son and daughter-in-law, and my mother-in-law, I’m not looking forward to traveling. It’s less difficult now because my daughter and I have just a pill for our maintenance medication, but we still have to plan for and pack our rescue meds and supplies.

Additionally, HAE is only one of my several diagnoses, which include mast cell activation, chronic Lyme disease, long COVID-19, Ehlers-Danlos syndrome, arthritis, and neuropathy. All of them are affected by stress. I’ve mentioned that not all stress is negative; even a fun party can induce it. So the summit is bound to pose challenges.

For Leah, stress can be even worse because it exacerbates her chronic daily headache and intractable migraine. Travel can especially heighten her pain and suffering.

Recommended Reading

May 8, 2025 News by Marisa Wexler, MS

Biocryst seeks FDA OK of Orladeyo for HAE patients as young as 2

Anticipating our care

All that being said, we have to consider all these pros and cons when traveling. For instance, we must build in extra time between flights, arrival, and settling in. It starts with rest before the first travel day. Eventually, we must plan downtime between each event to help conserve our energy levels for each activity so we can be fully present around others. Then we’ll need more rest before the full day of travel home, and even more recovery time once we arrive and collapse.

Therefore, while the summit might be a quick, easy weekend trip for my husband or someone else who doesn’t have serious health issues, for us it’s a weeklong endeavor that’s not just physical but also mental. If all goes according to plan and we don’t have a breakthrough attack or, worse yet, an emergency room visit, we consider it a success.

I’m sure we’ll experience ups and downs along the way. Thankfully, we have more than a month to prepare mentally, physically, and emotionally. The summit will probably be our one big event this year. Let’s do it! For anyone else planning to be at the July HAEa summit, we look forward to seeing you there.

Note: 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. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.