Asprin Exacerbated Respiratory Disease is a disease characterized by a triad of symptoms: asthma, nasal polyps and an allergy to aspirin and other NSAID drugs. The reaction to NSAID drugs can be severe, even life threatening. Because the symptoms appear slowly overtime, and because the disease is not commonly well understood, it is often very difficult to diagnose. While symptoms can be managed through various medications and surgeries, there is no cure. September 26, 2019 is the second AERD Awareness Day. In honor of this, I’m sharing my AERD story.
Thank you to Kidding Around Greenville for sharing my story.
My AERD Story
My second son was born by C-section in December of 2009. This was also the day that I would experience my first NSAID reaction. I had developed asthma during this pregnancy, which my doctor thought was odd. I had been suffering for over a year with significant congestion. But I was a new mom, with a toddler at home and another on the way and I just figured I was tired. I was in a new place, I was experiencing allergies here in the south that I’d never had back in Upstate, NY. There was nothing to worry about.
But after my C-section I was treated with IV Toradol for break through pain. Toradol is an NSAID. I should say here that until this moment I had never reacted to any medication and had a history of handling NSAIDs like ibuprofen as a young adult just fine. But this was the day that would no longer be the case. I remember holding my new baby boy, talking with a visitor and realizing I was starting to wheeze. I asked for my inhaler, I used it, but it wasn’t helping. My husband got the nurses and they came in, immediately had me on oxygen and had paged respiratory. I was dizzy, crying and I was scared. Everyone kept asking me why this was happening, and I didn’t know! I even had one doctor tell me that my inhaler must have been empty. It was not. For the remainder of my stay I had regular respiratory treatments and then I went home, not knowing why this had happened.
It would be years later, after reacting to simple ibuprofen twice, after sinus infections, after a misdiagnosis by an ENT who didn’t know the disease extended to all NSAIDS and not just aspirin, after allergy shots, and nasal polyps so large I could not breathe through my nose at all for two years, that I would finally have a diagnosis. Finally, I found an allergist who knew something of the disease and got a diagnosis. However, there wasn’t much he could do other than refer me for surgery and give me steroids. Five years ago I had my first surgery and regained a little bit of my sense of smell but lost it again within months as the polyps started to grow back and it all started all over again.
As my symptoms slowly worsened again over several years, I’ve dealt with periods of depression. Imagine not being able to smell cinnamon in the fall or pine trees in December or even dinner on the stove! Over these years I’ve had long periods of time where I feel achy and flu-like, with sinus headaches, reflux, asthma. Some days are really bad, some days are great, and there often isn’t a clear reason why. The worst is knowing this thing will never really go away. This is my normal.
Last year, I had my second sinus surgery and an AERD specific treatment called Aspirin Desensitization, which requires daily intake of high dose aspirin. Thus far my polyps have not returned. While I still experience many symptoms of this disease, I am periodically able to smell things annd for that I am very thankful!
Hope for the Future
In fact, I’m quite blessed in a lot of ways. I did find a doctor who knew about AERD. I did find an ENT who knew the illness and could help me. And I did find my way to see experts in the field currently studying this disease. The doctors there knew exactly what all the strange symptoms I’d been having were, and finally I didn’t feel like a mystery patient! There are new options for people with AERD available because of ongoing research. It is so encouraging to know that it might not always be this way. Hope is good!
AERD Awareness Day
Why am I sharing this? The goal of AERD Awareness day is multi-faceted. We want people to know of this disease because it can be so difficult to diagnose. We want doctors to be made more aware so they might recognize the pattern of symptoms and educate patients so they might avoid life threatening NSAID reactions. How much easier the last ten years of my life would have been if the doctors and nurses in the hospital had recognized that I might be reacting to toradol because I had AERD! We want ERs to know that yes, an allergy to an NSAID is a real thing and no amount of Benedryl or the like will make it safe to give AERD patients. And we want to emphasize the fantastic work being done researching this illness, finding new and safer ways to handle the symptoms, and maybe even finding a way to a cure.
Looking for more information?
Expert doctors in AERD run these clinics:
Brigham & Women’s AERD Center
The Penn Medicine AERD Center
Scripps AERD Clinic
These are great places to look for information on AERD, as is The Samters Society.
Thank you for reading my story and sharing it to help us raise awareness of AERD.