Expert Panel Q&A

This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024

Expert Panel Q&A

Prof. Marc Riedl was joined onstage by fellow Scientific Committee Co-Chairs Dr. Olga Barrera, Prof. Anete Grumach, and Americas keynote speaker, Prof. Bruce Zuraw. Fellow keynote speaker and HAEi’s Chief Medical Advisor, Prof. Marcus Maurer, facilitated the session.

We present a few of the questions asked.

I’m not sure if it is an attack or a stomach ache; how do I know to use my on-demand therapy?

The panel suggested that this is a tough one. Many things cause abdominal pain, not just HAE. Patients are experts on their own bodies, and they often know the difference between HAE and other causes of abdominal pain.  The general recommendation is if you think it could be an HAE attack, go ahead and treat it. And try not to wait too long. If the rescue medicine doesn’t work, and your abdominal pain continues to get worse, you have to be worried it’s not HAE. Go and seek medical help.

Can a person with HAE have Botox or use hyaluronic acid?

Absolutely, responded the panel. You should be able to do anything that you want. If you want a piercing, get a piercing; if you want a tattoo, get a tattoo. It’s your life; you should be able to live as you wish. But you need to know that these are all situations that can lead to an attack. So you need good protection, you need treatment, and then you can do anything that you want.

Hormones and stress affect my HAE: What can I do?

Hormone effects are well described, especially estrogen, which is part of the reason women in general have more symptomatic HAE. It’s a tough one because there is a downside to lacking estrogen. We don’t generally recommend depleting estrogen or blocking estrogen. It is wise to avoid oral contraceptives containing estrogen. Similarly, in menopause, avoid estrogen replacement therapy. Both will worsen HAE symptoms.

On the stress side, there’s no magic wand. You’ll have less stress if you have the medicine to treat the attacks. But, effective medicine is not a prescription for no stress in your life. It’s not that easy. Life is stressful. You need to find the tools to help you manage your stress. Whether exercise, meditation, reading, or spending time with your family, do whatever helps you.

We don’t have modern medicines in my country. Can I use older medicines like androgens?

Access to medicine is a big issue and one we all continue to work on. If you don’t have access to modern medications in your country, you have to work with what you do have. Androgens can be effective. The concern is potential side effects. Discuss this with your angioedema specialist. If you decide to go on androgens, the guidelines include recommend monitoring, and always use the lowest dose that will prevent the symptoms.

What are upcoming plans to bring access and care to countries with small or no HAEi Member Organizations?

Dr. Barrera told the audience she felt this conference had opened a path for those at the meeting to reach and teach the rest of the doctors who do not know the disease and to get the appropriate drugs for our patients.

Prof. Maurer added that patients are the reason and purpose for this conference. The volume of studies, works, talks, and lectures from the important specialists in the field has been incredible and can only help everyone to make progress.