By Gary Fitzgerald
“Oh my gosh, you have another cold?” … “But you’re just sneezing. You’re fine.”
Rhonda Nelson has heard it all before. And it’s frustrating when people who comment about her coughing and sneezing fits, chronic sinus infections and severe headaches don’t fully understand what she’s going through.
“Sometimes it’s easier to tell them it’s allergies,” Rhonda admits.
It’s not allergies.
It’s AERD – aspirin-exacerbated respiratory disease – a rare condition that affects between 1.2 and 1.6 million people in the United States. Also known as Samter’s Triad, the disease involves asthma, nasal polyps and a sensitivity to aspirin and other non-steroidal anti-inflammatory drugs (NSAIDs). Symptoms vary widely from person to person, but for some it can be life-threatening.
Rhonda and her husband Wayne, lead singer of the Little River Band, are working to raise awareness of AERD – not only in the public but also among healthcare professionals.
“Living with the frustration of people not taking this disease seriously has been a driving factor in why we’re so honored to have this opportunity to align with Allergy & Asthma Network and be able to raise awareness,” Rhonda says.
Allergy & Asthma Network recently sat down with Rhonda and Wayne from their home in Phoenix, Arizona, for a Q&A interview.
Q: Rhonda, what symptoms first emerged that suggested you had AERD?
Rhonda: I had never been diagnosed with asthma and I had never had problems with allergies. It started with a cold. I was taking cold medicine and I would wake up in the middle of the night and start coughing and wheezing for hours. That was really the first clue something was not right.
Wayne: The oddest thing about it was she would always wake up coughing and wheezing right at 3:30 in the morning. And of course it was exhausting. We would try to recover throughout the next day.
Q: When were you diagnosed with AERD?
Rhonda: I was 33 when I was diagnosed. It took about a year to find a doctor who knew about AERD. I was seeing a physician who told me to undergo allergy shots, but my symptoms kept getting worse. Later, after Wayne and I relocated, I started with a new allergist. He diagnosed me immediately: ‘You don’t have allergies, you have AERD.’ At the time, it was called Samter’s Triad.
In hindsight, I was probably worsening my condition because I was taking medication that contained aspirin without knowing aspirin sensitivity was a symptom of AERD. Delayed diagnosis and misdiagnosis are very common.
Wayne: When Rhonda was finally diagnosed, that’s when we started on all these new procedures to try to fight this disease.
Q: What is the impact of delayed diagnosis or misdiagnosis involving AERD?
Rhonda: It is very frustrating. Maybe you go to the doctor with allergies, or you get diagnosed with asthma, but you don’t know you also have nasal polyps and an aspirin sensitivity – the doctor may not put it all together into an AERD diagnosis.
So you treat your asthma, but you’re not addressing other symptoms. It’s scary because AERD cannot be controlled if you don’t have an official diagnosis. If you take an aspirin for a headache, it could be life threatening and you would not know it.
As soon as I had a diagnosis and was able to start on a treatment path, it became obvious that everything that was done up until that point simply didn’t help.
Q: How do you manage AERD day-to-day?
Rhonda: It took a little bit of time to find the right combination of medications. I avoided aspirin and other NSAIDs, and later I underwent aspirin desensitization and daily aspirin therapy to reduce nasal polyp growth. I eventually had surgery to remove all of the nasal polyps. From that point on, I have kept my AERD under control. Thankfully, I’m not on a lot of medications – I know that’s not the case for many AERD patients.
One key factor – and it took me a whole lot of sinus infections to realize this – is it’s important to do a daily nasal rinse. AERD patients tend to get a lot of sinus infections. Nasal rinses can keep your nasal passages clean and fend off a virus or bacteria.
So I encourage anyone with AERD to stay on top of your nasal rinses. For me, it’s like brushing my teeth – it is just something I get up and do every day.
Q: Rhonda, you do a lot of traveling with Wayne and the Little River Band. How do you manage AERD while traveling?
Rhonda: In addition to my medications, we carry wipes and hand sanitizers. Since airplanes are notorious for poor air quality and catching viruses, we make sure we wipe down our seats and tray tables. If I catch a cold, it can knock me down for 10 to 11 days because my lungs are not as strong as someone who doesn’t have AERD.
For my asthma, I always keep a quick-relief inhaler and a small portable nebulizer in my purse. I can charge the portable nebulizer with a USB port. I don’t go anywhere without it. When we have been on a tour bus and we’re out in the middle of nowhere, and then I experience an asthma flare, it’s scary. It’s a relief to know treatment is always with me.
Q: Wayne, talk about your experiences serving as a caregiver and how you’ve helped support Rhonda?
Wayne: I recently read a stat that the divorce rate among AERD and asthma patients is 4 to 5 times higher than the national divorce rate. I can understand how the disease can actually tear people apart, because it is so jarring. Symptoms happen so fast. We could be watching a movie and all of a sudden, we have to pause it and wait for another day to watch it because Rhonda doesn’t feel well and can’t enjoy it.
These are things I take as part of my vow and part of my commitment. Rhonda is the person I love. I would do anything for there to be a cure, but short of that, I just have to adapt and support her. For example, I also carry a portable nebulizer when we travel, just so we have two that are fully charged. And I am now far more aware of shaking hands and wiping down areas where I know a lot of people have been, such as on airplanes.
Other members of the Little River Band have respiratory issues as well, so they understand if Rhonda has a bad flare, I might have to be with her for a while so I can help her.
Rhonda: When I’m on the Little River Band tour bus and I experience an AERD flare, everyone is always very supportive and understanding. If I need to be in the back of the bus by myself so I can get through it, everyone is respectful of that. It really helps when you have that kind of support and understanding around you.
Q: Why is raising awareness of AERD so important to you?
Rhonda: We were in Minnesota and Wayne was on tour. After a show, the air conditioning unit in the hotel room had a moldy smell, and I could feel a flare coming on. My throat was closing up and I was turning blue. We alerted the hotel front desk and an ambulance was called. In the back of the ambulance, as I’m gasping for air, the emergency medical technician turned to me and said, ‘Okay, we know you are with Little River Band. What kind of drugs have you been doing?’ Wayne was in the front seat of the ambulance and driver asked him the same thing! That story is at the heart of why we are so attuned to raising awareness. I know it was just a perception they had, but I’ve found many healthcare professionals don’t really understand AERD.
Raising awareness is also important because the medications that help AERD patients are not always easily attainable. If people are more aware, especially healthcare professionals, we can start climbing that mountain of making these medications more accessible. Some are very expensive and if your insurance doesn’t cover them, or you don’t have insurance at all, how can you afford it?
Q: What do you think is the most important thing patients and caregivers should know about AERD?
Rhonda: An AERD diagnosis doesn’t mean you have to give up things in your life. We travel a lot, I exercise, and I take horseback riding lessons. AERD doesn’t stop us from doing things we enjoy. It just alters the way we do them.
If you suspect you have AERD, don’t give up on finding a doctor who is knowledgeable about the disease and can give you an accurate diagnosis.