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Let Me Breathe the Air: Getting to Know AERD

 

Welcome to the first episode of our “Let Me Breathe the Air” podcast with Rhonda and Wayne Nelson. It’s available for viewing as a video on this page. You can also download the podcast via the PodBean app for listening anytime, anywhere.

Rhonda and Wayne, lead singer of the rock group Little River Band, are raising awareness of Aspirin-Exacerbated Respiratory Disease (AERD), a rare condition that affects between 1.2 to 1.6 million people in the United States. It’s also known as Samter’s Triad.

The podcast is offered by Allergy & Asthma Network.

In this Episode…

46 seconds – Rhonda and Wayne Nelson introduce us to AERD and share facts about the condition.

Excerpt: AERD involves:

      • asthma
      • nasal polyps
      • a sensitivity to aspirin

Many people with AERD also experience chronic sinus infections and a loss of sense of smell.

4:32 – Common Misconceptions of AERD

Excerpt: Once AERD is diagnosed, a lot of people think if you just avoid aspirins and NSAIDs, then you’re okay. That is absolutely not true.

6:10 – The importance of getting a proper diagnosis

Excerpt: Without a proper diagnosis, people with AERD symptoms are often given repeat courses of antibiotics or oral corticosteroids. They undergo multiple surgeries. And this could go on for years and years, never getting to the root cause.

10:02 – How easy it is for people to misunderstand AERD, especially during the COVID-19 era

Excerpt: AERD symptoms often present as a cold, but it’s maddening because it’s not a cold and we’re not contagious. It’s really a hard concept for people who don’t know what AERD is, for those around you who see you with those symptoms. And now in the current situation with COVID-19, displaying those symptoms can make people a little more nervous.

13:40 – Living with AERD

Excerpt: AERD does not really stop us from doing the things we enjoy doing or living our lives the way we want to live or travel, it just truly alters the way we do them.

17:10 – Why Wayne and Rhonda advocate for greater access to AERD medications and health insurance

Excerpt: The medications to keep AERD well maintained are very expensive – with and without insurance. We see great challenges with getting insurance companies to approve some AERD medications. Many insurance companies require AERD patients to undergo step therapy, but it is the physician who knows best what the correct medication and treatment is.

21:45 – How to find the right protocol for treatment

Excerpt: Like many other diseases, there is not one protocol for AERD treatment. It takes working with your physician to find the right combination of medications to keep your disease under control and well maintained.

24:00 – Wayne and Rhonda share the story of a severe AERD flare prior to a Little River Band concert in Oregon

Excerpt: We had to stop and ask the [limo drivers] to find a hospital. Rhonda could feel her throat closing up. Their first reaction was, ‘You’re not serious?’ And we said, ‘Yeah, we’re serious.’ There’s a breathing issue and we need to go to the ER right now. Forget sound check, forget concert, forget it all. When AERD hits, it’s life or death.