Questions for the expert panel
To close the patient track, an expert panel of HAE physicians was assembled to answer questions from attendees. This esteemed panel comprised the 2025 HAEi Regional Conference EMEA co-chairs, Dr Mauro Cancian, Ass Prof Emel Aygören-Pürsün, and Dr Iman Nasr. It was chaired by Professor Markus Magerl, who posed the questions, which were grouped into three topics: living with HAE, medication, and other queries.
Before the expert panel went on stage, Debs Corcoran, HAEi’s Director, Research, took the chance to ask Professor Farkas two questions related to her expertise in women with HAE.
The first question was: Can HAE attacks fluctuate with the hormonal cycle? Prof Farkas felt that this was the case, as menstruation is a common trigger for attacks, so someone susceptible to hormonal changes could see more or more severe attacks.
Secondly, Debs asked: What is the recommendation on stopping treatment when you want to get pregnant? Prof Farkas suggested that any patient taking androgens should stop if trying for a baby. Beyond this, Prof Farkas indicated there is limited experience beyond a recommendation to use plasma-derived C1-inhibitor. Trials are ongoing to see if other treatments are safe in pregnancy, such as lanadelumab.
The first question for the panel, which was estimated to have between 50 and 100 years of combined HAE experience, was: Can you cure HAE forever?
The panel suggested that even with the potential of gene therapy, it is currently not possible to say that someone is cured of HAE. There might always be a breakthrough attack. However, the panel agreed that with modern long-term prophylaxis, it is possible to achieve complete control of the disease and a normal life for patients, free from the symptoms of HAE.
An audience member asked: Does HAE get more severe from generation to generation, such as from grandmother to granddaughter?
The panel said that HAE is highly variable. There are reports from patients that while a relative had a very severe form of the condition, for others, there were only mild symptoms.
Can food trigger an HAE attack?
The panel felt that an underlying food allergy was a more likely explanation. One of the panel members recalled a patient who loved to eat nuts but always found himself having an attack when he ate them, until he received long-term prophylaxis. Now he can eat nuts without any consequences for his HAE.
Can HAE patients donate blood or organs?
The panel was happy to recommend blood donation. There was a single report of a woman who was diagnosed with HAE after receiving a liver transplant from an HAE patient. For them, this was a special type of acquired angioedema. The panel suggested that there may be case-by-case decisions, but they would still say that HAE patients should be able to donate blood or organs.
Does a healthy diet and exercise reduce attacks?
The panel all shared anecdotes of how a healthy diet and physical activity had helped their patients. In particular, reducing the inflammatory response by losing weight can improve HAE attacks. Overall, the panel strongly recommended a healthy diet and exercise to their patients.
What are the risks of going deep-sea diving?
The panel was limited in their own diving experience, but still suggested that, with effective long-term prophylaxis, any activity should be possible for people with HAE. However, they cautioned that the stressful nature of some dive sports may increase the risk of attacks.
Can I get a tattoo as an HAE patient?
Yes, the panel said. In their experience, many patients had had tattoos with at most mild swellings following the procedure. Long-term prophylaxis should make this another normal part of life for people with HAE. Of course, joked one panel member, you can get a tattoo if you want, and your mum agrees.
What will happen with my HAE if I need hypersensitization therapy for wasp stings?
The panel was clear that no medically required procedure should be avoided in HAE patients. The procedure, which is undertaken to limit a dangerous overreaction by the body to wasp toxin, can be managed with on-demand treatment and long-term prophylactic medication.
Are there studies of the long-term effectiveness of lanadelumab?
The panel said that yes, there is evidence and data that confirms the long-term efficacy of lanadelumab as prophylaxis for HAE. More broadly, there is no suggestion that any HAE treatments lose their effectiveness over time. In effect, people with HAE do not develop resistance to treatment.
Should an oral treatment or an infrequent injection be chosen for a 13-year-old with HAE?
The panel agreed wholeheartedly that the best choice here is the one made by the young person with HAE. If you want someone to take their medication long-term, it should be the medication they want to take.
Does a medication always have the same effect on the entire body?
The panel highlighted that acute treatments for attacks work faster for mucosal attacks, such as those in the throat or gut.
The last question in the time allowed was: How do I know I’m seeing the right doctor?
The panel suggested that every HAE patient should feel comfortable questioning their doctor about their knowledge of the condition and its treatment. Additionally, by looking at the HAEi and ACARE websites, you can check if your doctor is part of an accredited center.
