“I made it to Minneapolis! I will be seeing my mast cell specialist in the morning. This is the farthest I have ever traveled to see a doctor, but you will go any distance to keep a doctor that saved your life.” (Photo: Instagram)
For some, food allergies are simply an inconvenience — a health condition that means PB&J’s are out of the question. But for Brynn Duncan, 21, they are a constant — and potentially fatal — guessing game. Some days, she can eat small portions of mashed potatoes, for example; on others, this same food would send her immune system into life-threatening overdrive. The same goes for fruits, vegetables, milk, soy, and nuts, as well as other triggers, such as smoke, perfume, and the sun, according to CNN.
That’s because Duncan has a rare condition called mast cell activation syndrome. “Mast cells are there to protect us against parasites and other things that could attack our bodies,” says Dr. Mariana Castells, associate director of the Mastocytosis Center at Brigham and Women’s Hospital. “They can also be active when patients are allergic to, say, peanuts.” Although Duncan has a normal number of mast cells, hers are unusually active, releasing unnecessary amounts of inflammatory chemicals, like histamine and prostaglandins.
“What doesn’t kill you makes you stronger!” (Photo: Instagram)
This can lead to a bevy of symptoms ranging from the uncomfortable — itching, flushing, diarrhea, mental fogginess — to life-threatening anaphylaxis, says Castells. As Duncan explains on her blog, Brynn’s Bubble, “Mast Cell Disease causes me to be allergic to just about everything. I have so many severe food allergies that I rely on a feeding tube to provide me with proper nutrition.”
To be diagnosed, a patient must respond to medications that control mast cell activation, such as antihistamines, and other conditions with similar symptoms, like Crohn’s disease, must be ruled out, says Castells. Duncan was diagnosed in 2012, after a grueling seven-year search for answers, and is being treated with Benadryl — but not in the way most of us take the drug. She requires a 24/7 Benadryl pump, giving her body a constant supply of the antihistamine and cutting the number of drugs she needs to take by half.
“I am Disney ready (and so is my feeding tube)!” (Photo: Instagram)
So why does Duncan’s disease flare up on some days, and seemingly vanish on others? (As she describes it, her mast cells become “angry” sometimes.) “The triggers for these symptoms are different for each patient,” Castells tells Yahoo Health. Alcohol, aspirin, and other NSAIDs; spicy foods; changes in temperature, and tobacco smoke can all aggravate symptoms, leading to a heightened reaction to an allergen.
Duncan also has postural orthostatic tachycardia syndrome, or POTS. Duncan writes that it causes her to pass out if she stands for more than a few minutes at a time, adding, “I rely on a wheelchair to help me get around so that I am not constantly having to stop what I’m doing to find a place to sit when I start getting lightheaded and dizzy.”
“Probably 10 percent of women that have mast cell activation syndrome may have POTS,” notes Castells. “There is a lot of interest to see if there is a genetic link [between POTS and mast cell activation syndrome]. This is a very active area of study.”
Health problems leave the 21-year-old feeling like she lives life in a bubble — thus the name of her blog, Brynn’s Bubble. “It’s really difficult to get the symptoms under control,” Duncan tells CNN. “You spend a lot of time alone. And it can be very isolating. But thanks to social media, I haven’t felt alone.”
I never thought that I would see this day. Guess who just walked a mile?! Everyone knows that life can change for the worst in an instant, but I think we all forget that things can improve just as fast. Miracles happen, my friends. (Photo: Instagram)
And hope is on the horizon. In 2012, Duncan was admitted to the hospital 30 times and began suffering from seizures and severe muscle contractions, or dystonia. And at the beginning of last year, she couldn’t stand without a walker or leg braces. “Today I can walk up the stairs without thinking twice about it,” she writes. And with the help of her Benadryl pump, she can now eat foods that once would have triggered anaphylaxis.
The disease has not just changed her physically. It’s also given her a new perspective on life: “One of the parts that I appreciate most about living with a chronic illness and having so many close friends with chronic illnesses — I don’t leave words left unsaid. I tell my friends that I love them every chance I get because in the back of my mind I always ask myself if I would be happy with my words if they were to be the last words to a dear friend.”
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