AERD: A Rare Disease Caused by and Treated with Aspirin
Allison Fite suffered a severe sinus infection at age 16. For the next ten years, Allison suffered infection after infection, at least one per month.
“Having these sinus problems and not being able to breathe was debilitating,” says Allison.
Allison’s doctors were at a loss. They thought she had allergies, but the tests kept coming back negative. Allison eventually figured out that she had asthma in addition to nasal polyps – benign tumors that grow inside the sinus cavities. Allison was also sensitive to alcohol, or as she puts it, “allergic to fun.”
She was 20 at the time, living in Thailand. Allison traveled all the way to the US to have the polyps removed, but they ended up growing back. She underwent the same surgery a second time at age 25, but the polyps grew back 8 weeks later.
“I was seeing a doctor in Bangkok at this point,” says Allison. “He was like, ‘This is not normal.’” When the doctor mentioned that nasal polyps are sometimes cause by aspirin, things started clicking into place.
In the meantime, Allison’s mother forwarded her a presentation she found online. In it, Boston immunologist Dr. Tanya Laidlaw explained that AERD (aspirin-exacerbated respiratory disease) appears in “patients who had this triad of asthma, nasal polyps, and these rather idiosyncratic reactions to medication like aspirin.”
Allison knew she had the first two symptoms, but wasn’t sure about the third. When she approached her doctor in Thailand, he tested her by giving her a tiny sliver cut from a single pill of aspirin.
“Forty-five minutes later,” says Allison, “I’m sitting in this hospital waiting room coughing, sweating, and my blood pressure spiked. And they’re like ‘OK, stop. Give her medicine; she has the disease.’
Allison was diagnosed with AERD. “It felt so good” to finally have a diagnosis, she says. “I started tearing up in this doctor’s office mid-horrible reaction.”
The only problem now was treatment. The first step is a process called “aspirin desensitization,” in which patients are overloaded with aspirin. Allison’s doctor had never done it and wasn’t comfortable doing it.
“I don’t think you’ll find a doctor in Asia that is (comfortable with it),” he said.
Allison traveled to the US again, this time to visit Dr. Laidlaw’s clinic. Allison’s new doctor explained that nobody knows why aspirin desensitization works, but it works.
After treatment, Allison’s sensitivity to aspirin disappeared along with the majority of her other symptoms. “It’s amazing,” she says. “Prior to that, I had one (a sinus infection) once a month.”
Dr. Laidlaw remains frustrated with the lack of awareness about AERD. She estimates at least 20% of those suffering from the disease don’t know what they have. “It’s really frustrating.” For clinicians who have no specialization in ear, nose, and throat medicine or immunology, AERD is easy to miss. And there’s a serious lack of science when it comes to the illness.
When Laidlaw first started studying AERD nearly ten years ago, she found there had been virtually no research on the topic since it was first discovered in the early 1900s. Aspirin-exacerbated respiratory disease is not an allergy. And there’s no pattern linking it to a toxin. Family history also doesn’t play a role.
Laidlaw thinks AERD may begin with an initial infection, such as the serious sinus infection Allison came down with when she was 16. The body’s immune system activates to fight the infection, but never turns back off. That person is then left with an excessive amount of white blood cells that can irritate the airway and inhibit smell receptors.
Victims also produce an excess amount leukotrienes – inflammatory molecules that may be responsible for many of AERD’s symptoms.
Allison, now 27, still worries about her condition. She must continue taking aspirin to maintain desensitiziation – for the rest of her life. “Say I get in an accient, and I bleed too much because of the aspirin,” says Allison.
Her symptoms aren’t completely gone, and she still gets sick if she drinks alcohol. Plus, she worries that taking aspirin every single day may result in negative effects later in life. Until another alternative is developed, however, Allison plans to stick with aspirin.
