Living with AERD (Samter's Triad)
A Life Changing Diagnosis
Living with Aspirin Exacerbated Respiratory Disease can be a challenge. For most of us, coming to terms with the fact that we have a chronic condition is disheartening. Many of us enjoyed good health before developing AERD. The most common age of diagnosis for AERD is 34 – many of us are in the prime of our lives enjoying good health when everything suddenly goes downhill. AERD is a frustrating disease to manage because it can be difficult to find a doctor who understand the disease and how to treat it. Most of us see several doctors before being diagnosed, and even then, the doctor who diagnoses us may not know the best treatments.
According to the AERD patient survey done at Scripps, on average, patients rated their quality of life at 7 out of 10 (with 10 being the worst). 31% of patients reported depression. AERD is life changing. It's worse than asthma, it's worse than nasal polyps, and it's worse than not being able to take aspirin or NSAIDs. Our bodies are in a state of inflammation and we generally feel pretty crummy.
Steps to Take
Learn about the disease so that you can be your own advocate. Unfortunately, we cannot always rely on every doctor we see to understand what AERD is and how to treat it. There is a map of experts on the disease and other patient recommended doctors available on this page. Seeking out a doctor who truly understands the disease can have a big impact on your quality of life. It’s very common for patients to live for years with AERD before being offered helpful treatments. Many patients are offered only antihistamines, antibiotics, nasal sprays, and occasional oral steroids. These treatments are of limited benefit and there are better ones available. There are treatments available that can reduce the need for surgery, reduce the need for oral steroids, and improve quality of life overall. If you haven’t been offered helpful treatments, seeing an expert on the disease could make a big difference for you. This is a chronic condition and there is no miracle cure. However, with the right combination of treatments, most patients are able to regain quality of life.
AERD Can Be Dangerous
There is a real risk of life threatening reactions with AERD. It is not uncommon for AERD patients to accidentally ingest NSAID containing medications. Many patients are never provided with a comprehensive list of medications that must be avoided. There are hundreds of over the counter medications that contain NSAIDs and it’s not always an easy task understanding what medications are safe for us. Many patients experience significant anxiety about taking new medications and have a sense that they can’t trust their doctor to know what medications are safe for them. This anxiety is not unfounded – research has found that 1 out of 4 AERD patients has accidentally taken an NSAID and that often, this medication had been prescribed by a physician. Due to lack of awareness of AERD, doctors who don’t specialize in the disease are not always familiar with which medications are safe for us.
Reactions can be severe and life threatening. One study found that only 30% of AERD reactions were able to be controlled without acute medical care - most required emergency room care or hospitalization.
Steps to Take
Be your own advocate. Print the list of medications to avoid and provide a copy to every doctor who treats you. Read labels on over the counter medications carefully. There is a printable wallet card available that you can carry with you. Having this information easily accessible in an emergency situation could be life-saving. There is more information available on this page about which medications are considered safe for us.
People Don't Understand
Having a disease that so few people know about can be isolating. It's a common for AERD patients to feel frustrated when trying to explain this disease to others. In many ways, AERD feels more similar to an autoimmune condition than other allergic disorders. Most people who have allergies cannot identify with the intense inflammation that we experience on a daily basis. The name of the disease can confuse people. Many people hear “aspirin exacerbated” and think that as long as aspirin is avoided symptoms should be under control. Every AERD patients knows that this isn’t the case, but it can be a difficult thing to explain to other people. It’s a chronic immune disorder and avoiding aspirin and NSAIDs is not enough to treat it.
Steps to Take
Having a good support system can make a big difference. Talking with other patients is a great way to feel less isolated. In our support group on Facebook, thousands of patients share their experiences and support one another. Being able to communicate with other patients who understand what you’re going through can be life changing. You don’t have to struggle with symptoms alone – join the patient community.
It’s also important to educate yourself on the disease. The better you understand it yourself, the more empowered you will feel to be able to explain it to other people. Many patients have said that they tell people in their lives that they simply have allergies, because it’s easier than trying to explain what AERD is. While it might be easier, patients should not feel that they have to hide the fact that they have a serious chronic illness. Explaining the disease to others helps spread awareness and can give the people in your life a better understanding of what you’re going through.