Living with AERD (Samter's Triad)
A Life Changing Diagnosis
Living with Aspirin Exacerbated Respiratory Disease (AERD, Samter's Triad) is a challenge. For most of us, coming to terms with the fact that we have a chronically debilitating condition is disheartening. Many of us were in great health before AERD. The most common age of diagnosis for AERD is 34. We're in the prime of our lives.
AERD is an especially frustrating disease because there are so few experts. Most of us see several allergists and ENTs before being diagnosed, and even then, the doctor who diagnoses us may not know the best treatments. (Check our map if you need help finding a doctor!)
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.
AERD Can Be Dangerous
In addition to the chronic misery caused by the disease, there is a risk of life threatening reactions. It is not uncommon for AERD patients to accidentally ingest NSAID containing medications. Because NSAID sensitivity develops suddenly, most AERD patients have had an unexpected reaction to an NSAID at some point. 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. Not all AERD patients have severe asthma, but many do. A European study found that only 20% of AERD patients had their asthma under control.
People Don't Understand
Having a rare disease can be isolating. It's a common experience of AERD (Samter's Triad) patients to feel frustrated when trying to explain this disease to others. In many ways, it is more like an autoimmune condition than other allergic disorders. Most people who have asthma or allergies cannot identify with the intense inflammation that we experience on a daily basis. Talking with other AERD patients is a good way to feel less isolated. Visit the forum or the Facebook Samter's Society Support Group and connect with other patients!
What You Can Do
One of the most important things you can do is educate yourself on the disease. Unfortunately, you cannot always rely on your local doctor to advise you on the best treatments. Second, find a doctor who knows about AERD. Know that there is no cure for the disease. Aspirin desensitization has helped many of us a great deal, but usually not enough to stop needing other medications. This is a chronic condition. There is no miracle cure. However, with the right combination of treatments, it is likely that you will be able to recover some of your quality of life.
Join the Facebook Samter's Society Support Group to connect with other patients!