Expert panel Q&A

As the expert panel of Professor Connie Katelaris, Professor Philip Li, Dr Ankur Jindal, Dr Michihiro Hide, and Dr Jovila Abong took to the stage, Debs Corcoran, Chief Scientific Officer of HAEi, made an announcement.

She told the assembled audience of healthcare professionals, patients, and caregivers that the scientific committee had awarded Dr Jane Wong with the HAEi’s Young Researcher Award for her work submitted to the Scientific Track of the 2025 HAEi Regional Conference APAC. Debs asked the audience to give Dr Wong a warm round of applause and congratulated her on winning the award.

The panel then turned to the final, but often highly anticipated, session of any HAEi conference, when the experts respond to the questions patients and caregivers want answered.

The panel, facilitated by Dr Jovila Abong, started with the question: Hormones are usually reported as a trigger for attacks; have you noticed any trends of co-morbid hormonal disorders?

The panel noted that any imbalance in hormone levels could theoretically be a problem. Still, none of the panel felt that there was anything they had noticed in practice or seen reported in the literature.

The next question was: How can I manage my HAE while still enjoying sports?

One of the panel members disagreed with Professor Katelaris’ earlier point about contact sports. They felt that if a beloved sport is causing attacks, you can do a different sport, but you can also have prophylaxis to prevent attacks, where it’s available. If you only have non-specific treatments, this will be different, and some of the drugs, such as androgens, would lead to failed drug tests for competitors.

The panel’s main point is that we should be working towards the normalization of life. Although this might be difficult in the Asia-Pacific region right now, people should be able to play whatever sport they want with appropriate preventative medicine.

A patient question was: I need to have braces. I’m worried about an HAE attack. What can I do?

The panel’s advice was to be well prepared. In some patients, having short-term prophylaxis is good, but it depends on the extent of any dental procedures. Dental work can trigger HAE attacks. Having teeth removed is a high-risk procedure, so prophylaxis or at least on-demand treatment should be available. For braces, perhaps invisible aligners (many brands available) may be safer and should be considered case-by-case. The same advice applies, the panel said, to Botox injections, tattoos, and dermal fillers.

The next question was: Is the location of a rash an indicator of where the attack will be?

No, the panel said. The location is no predictor of an attack. You cannot predict where an attack will happen.

After that quickfire response, the next question was: When should I treat an HAE attack?

The immediate reaction from one panel member was: “As early as possible.” Guidelines do not recommend treating during prodromal symptoms; you should treat as soon as you see a lump or swelling coming, the panel said. The panel understood that the amount of medicine may be limited for some. They said that you treat every attack as soon as you recognize it in the ideal world. At the very least, always treat anything on the face or inside the mouth.

Can you cure HAE forever? was posed to the panel.

In most cases, they said, HAE is caused by a faulty gene. We don’t have a treatment to replace the gene, though that is a possibility in the future and is being looked at in trials now. That would be a one-time treatment that’s permanent. It wouldn’t prevent the faulty gene from being passed on to children. 

Another treatment question was: In Europe, there seems to be an increasing reluctance to prescribe tranexamic acid due to worries about blood clots. What is your view?

The panel agreed that blood clots are a potential side effect but not a common one. The reluctance is because it’s a non-specific treatment and has limited effectiveness in many people. In Europe, they have the luxury of specific, highly effective therapies. That said, the panel agreed that tranexamic acid is the drug of choice for acquired C1-inhibitor deficiency and in people with HAE with normal C1-inhibitor.

The doctors were now asked about doctors, with the question: How do I know I am seeing the right doctor to help manage my HAE?

For the panel, the answer was a doctor who is knowledgeable but also listens to the patient. HAEi and many country-specific patient organizations have lists of good HAE doctors you can ask about. One of the panelists joked that if the patient has to ask this question, they’ve not found the right doctor.

A question was raised about access: How can I help get medication in my country?

Here, the panel said that strength in numbers was vital to access. Partnerships between patients, doctors, and the pharmaceutical industry would be beneficial. It’s no guarantee, but it is important to start trying.

The panel digressed slightly to say how important it can be for patients to motivate their doctors through their proactivity and interest. The more a patient is positive and tries to learn and help themselves, the more this rubs off on the doctor.

The panel also stressed the value of strong patient advocacy groups. This will attract research and medication, which may not immediately lead to access for all, but will raise the standard of care in a country.

A patient asked the panel: How can I explain HAE to someone new in my life?

The panel felt doctors could help, for example, by offering to speak to prospective partners. Ultimately, great information resources are available through HAEi and the Member Organizations, which can teach people a lot. Cultural concerns, like those Yong Hao raised earlier, can be problematic. The panel felt that we shouldn’t be a society where HAE is stigmatized. The panel concluded that when better treatments are available, it becomes easier to overcome any stigma.

A caregiver wanted to know how to best support a patient with HAE?

Again, the panel felt that knowledge was key. By learning about HAE, you are better able to be compassionate and supportive. It is also important to find out what the patient needs and wants. For parents, that means not smothering children out of anxiety about the condition. “We want our patients to have normal lives,” said one panelist, “we need to encourage people to make their own way in life.”

The next question asked would managing stress reduce HAE attacks, would meditation help?

The panel said that whatever works for you in relieving stress will be beneficial. Stress is the most important identifiable trigger. But it’s important to not stress about being stressed, as it’s part of everyday life. The majority of HAE attacks happen without any identifiable trigger, so if you can avoid it, do, but don’t change your life over it.

One patient asked specifically if nutrition during pregnancy could lead to HAE?

The panel said that although HAE is due to a faulty gene, there’s absolutely nothing the mother has done that would cause that. It’s not in the control of any human and is purely a random event. You should not blame the mother.

In some cultures, the panel felt there is a persistent belief that eating something or not eating something else can cause HAE. It doesn’t. HAE is entirely down to genetics.

Our final question of the session: How might perimenopause or menopause affect my HAE?

The panel referred back to Professor Katelaris’ presentation. Some women report improvement, some no change, and some worsening. There may be disturbances during this time, but after menopause, things settle down, and you adapt.