An HAE travelogue – Evelien’s story

The 2025 HAEi Regional Conference APAC audience welcomed Evelien to the stage. Evelien is an HAE patient in Australia who shared a cautionary tale about traveling with the condition.

Evelien told the audience that her family is from the Netherlands, but she has been living in Australia for 25 years. For her father’s 80th birthday a couple of years ago, the whole family decided to go on the trip of a lifetime to Tanzania in Africa.

“It was wonderful, amazing!” she remembered. “We went on safari and saw the lions and elephants and giraffes. We had a very good time.”

Unfortunately, Evelien remembers the idyllic holiday for another reason. After a snorkeling trip, she started to feel a bit of swelling. She thought nothing of it, but the next day, her eyes became swollen, and then, most worrying, she felt pressure on her throat. Concerned, she rang Fiona Wardman of HAE Australasia (and HAEi).

There was quickly a realization that there was no medical option. South Africa’s hospitals were a 6-hour flight away. “I was in a lot of trouble,” she remembers.

Luckily, her sister and fellow HAE patient had on-demand treatment with her ‘just in case.’ Evelien got the intravenous treatment and the next day felt much better physically. But, Evelien deeply regretted how she put herself (and eventually her sister) at risk.

Evelien made it clear that she knows what she needs to do. She’s an active member of her Member Organization, is proactive with her medical care, and has been on prophylactic treatment for 30 years. In that different country, she said, you never know what position you’re going to be in.

“I’ve learned my lesson 100%. I travel with prophylactic and on-demand medication. I have it with me now. I don’t want to put myself in that situation again.”