comScore

A rare disease that tortures the afflicted, with few Minnesota doctors to treat it

Shanda Dorff is one of the few doctors who knows how to treat mast cell activation syndrome, and she's not taking new patients.

Shanda Dorff is one of the few doctors who knows how to treat mast cell activation syndrome, and she's not taking new patients. HealthPartners

In 2015, Chris Durant was the founder-director of what’s known today as the Out Twin Cities Film Festival. That’s when he noticed more things seemed to slip his mind.

Durant was forgetting what he did the day before, even the hour before. He had trouble responding to emails and phone calls, keeping appointments. It was alarming enough for him to quit his job.

The brain fog worsened, accompanied by roving headaches, fatigue and joint pain. Then, randomly and without warning, his throat would swell, sometimes to the point where it was hard to swallow or breathe.

Over the past three years, Durant has been in 102 doctors’ offices. Nothing helped. Then his friend, Donovan Harmel, happened to catch a news report about rare diseases. A woman on television described symptoms that sounded exactly like Durant’s. This general malaise of pain and lethargy had a name: mast cell activation syndrome.

Mast cells are a kind of white blood cell. Among other things, they’re in charge of releasing the chemicals that cause allergic reactions. But sometimes they get out of control -- releasing chemicals in excess and causing widespread inflammation.

“They’re kind of like rebellious teenagers, or toddlers having a tantrum,” says Shanda Dorff, a Roseville physician. The overreaction causes the painful conditions at once neurological, gastrointestinal, and in the skin or the joints. Once they’re set off, it takes time to get back to normal, meaning nonstop discomfort.

Few doctors know about it, because the syndrome is a fairly new discovery. It was identified in 2007 by Lawrence Afrin, a hematologist/oncologist. For a time, he practiced at the University of Minnesota. Patients came from all over the world for a solution to their peculiar symptoms.

By the time Durant figured out he may have the syndrome, Afrin had left for New York, leaving behind a years-long waiting list of patients. 

Dorff is among the few doctors who know enough about the syndrome to treat it. She says about 17 percent of the population suffer to some degree. She helps them get their lives back. Some are able to go outside and work full time. Aching, wheelchair-bound patients get their mobility back.

Miraculously, treating the syndrome is usually as simple as finding out what triggers the reactions and finding the right over-the-counter medication -- usually brands used to treat asthma and allergies.

The problem is that Dorff isn’t taking new patients. None of her colleagues can treat people in her absence.

Which left Durant to find another physician. His symptoms rose to a crescendo in the last year, making it hard to hold a job. He relies on the generosity of his friends to get by.

The search for a doctor was exhaustive. If he found one who was accepting new patients, they didn’t take his insurance, and charged $350 an hour with a three-hour minimum, making for a $1,050 total cost for an appointment.

“It just became overwhelming, navigating and advocating for what I’m dealing with,” he says.

He eventually found an oncologist who doesn’t know too much about the syndrome. But he’s in contact with Afrin. Now t’s about finding medication that will treat his symptoms, but don’t contain ingredients that cause flare-ups. That means constant trial and error – one that leaves him sick and in pain most of his days.

Until then, all he can do is wait and hope that one day he can be the person he once was: an activist, a filmmaker, a social, outgoing person. He misses that person.