For the past year, a Minnesota woman has lived in the confines of her bedroom, away from her husband, because the plastic-wrapped room is the safest place for her to be.
After receiving numerous misdiagnoses, Johanna Watkins, 29, was diagnosed with mast cell activation syndrome (MCAS) about nine years ago, Fox 9 reported. The body’s mast cells are meant to release chemicals that dictate immune system reactions, but Watkins’ release the wrong chemicals, to the wrong place, at the wrong time.
“We’re just entering a new era here where physicians just need to be aware that there’s a new kid on the inflammatory block so to speak,” Dr. Lawrence Afrin, a medicine professor in the University of Minnesota Division of Hematology, Oncology and Transplantation, who diagnosed Watkins, told Fox 9. “So when they see a patient who has multiple inflammatory problems, they’re having a hard time putting the whole package together and having a hard time finding effective therapy.”
One to 15 percent of the general population could have MCAS, but most people are undiagnosed and instead told they have multiple inflammatory disorders, like fibromyalgia, irritable bowel syndrome and chronic fatigue.
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While most patients will respond to a cocktail of medication, Watkins’ case is so severe that she has not responded to any treatment. Johanna and her husband, Scott Watkins, moved in with Dan and Lucy Olson, who invited them to stay with their four children. Johanna only leaves her upstairs bedroom for emergency room and scheduled doctor’s visits. Scott must stay in a room downstairs and wear a mask whenever he sees her.
“I can’t get too close,” Scott told the news channel. “I can’t hug her safely. I can’t hug her without hurting her.”
The space outside her room has an instantaneous effect on Johanna, Fox 9 reported.
“As soon as that door opens, I can feel it. My body goes into complete attack mode,” Johanna told the news station. “It feels like my body is waging war on itself. My throat automatically tightens. It kind of feels like Darth Vader doing a chokehold.”
The Olson family has adapted their lifestyle for the couple, including ceasing cooking in their own kitchen when Johanna became sensitive to odors. Five of their neighbors gave the host couple keys so they can use their kitchens instead.
Scott, a second grade teacher, is renovating a house with an apartment upstairs so Johanna can live comfortably downstairs. He hopes to move in in December. He also started a GoFundMe campaign to help fundraise for a custom safe living space for his wife.
“Every time I come back from those appointments, I feel grateful— just extremely grateful for everyone’s help to me,” Johanna said, “and the fact that I made it, and I’m back, and I got another day.”