10 things people with HAE need to know
At the 2025 HAEi Regional Conference EMEA, Professor Danny Cohn from the Netherlands spoke on the ever-popular topic of 10 things people with HAE need to know.
1. He opened his presentation with the first thing: Look ahead
While this can’t happen all the time, Prof Cohn asked people with HAE to prepare in advance. He gave the example of a dental procedure being booked for 8am on a Monday. This might be fine, but if you need help with the administration of short-term prophylaxis, the home care service will likely be closed, meaning there’s no one around on Sunday or Monday morning to help.
Other examples included stressful situations such as a driving test and making plenty of plans ahead of any travel.
2. Moving on: Don’t wait to diagnose
Prof Cohn said he had spoken to many families that had delayed getting tested or an HAE diagnosis for their son or daughter, in the belief that they didn’t want to bother the child. He stressed the importance of thinking about what might happen: What if the child goes on a trip, has an attack, and no one knows what to do?
We should not forget that HAE is a potentially fatal condition. While not all forms of early testing may be available to everyone in the EMEA region, it is important to consider testing as soon as possible rather than waiting to see what happens.
3. Next: Seek specialized and comprehensive care
Prof Cohn recounted how people with HAE had had to explain the disease to their physician, rather than the other way round. But if you look for a physician who has experience in the disease and its care, your story will sound familiar.
4. Have your emergency plan ready
Another way to get the best care is to have an emergency care plan ready. He told the story of an HAE patient who needed to go to the emergency room during an attack. His care was delayed by more than an hour because the junior doctor who saw him had to ask his supervisor, who then had to ask another hospital. If an emergency plan is ready, it can help avoid delays and unnecessary or incorrect treatment.
5. Importantly: The future looks bright
Prof Cohn described both the progress made in HAE and what the future holds as ‘mind-blowing’. He said that people with HAE can face the future knowing that things will really be different from the past.
6. Don’t blame yourself for an HAE attack
It’s common, Prof Cohn said, for patients to say that their attack was their own fault; they went out with friends while fatigued and had an abdominal attack. Or, they went mountain biking and had a genital swelling. It’s really unfair to blame yourself for an injury or an attack, he said.
‘It’s our joint task as patient and physician to enable you to do whatever you want and not suffer attacks.’
7. HAE should not affect your life
Prof Cohn told the story of a family that had avoided amusement parks and rollercoaster rides due to a fear of triggering abdominal attacks. This family, thanks to appropriate long-term prophylaxis, now does whatever they like, including skiing holidays.
8. You are in control, was Prof Cohn’s next ‘thing’
You are the one who decides if an HAE attack needs treatment, or if you need to call in sick, or whether to take part in an activity or event. It’s much better, if you can, to be in control by being able to self-administer your own on-demand treatment, Prof Cohn advised.
9. Don’t wait to treat an attack
Prof Cohn showed statistics demonstrating that the sooner you treat an attack, the less severe it is likely to become and the sooner its symptoms will be relieved. Don’t wait to treat your attack, Prof Cohn suggested: ‘When in doubt, treat.’
10. Realize you’re not alone!
Prof Cohn saluted the work of patient advocates across EMEA and the activities of HAEi in bringing people together to share experiences. The more we share and talk about our experience, the more others can learn to help better manage their HAE.
