Johanna Watkins hasn’t hugged or kissed her husband in a year.
In fact, the 29-year-old from Minnesota is completely unable to physically share the same room as her husband due to a rare disorder known as Mast Cell Activation Syndrome. The disorder affects her immune system and renders her allergic to hundreds of things including food, chemicals, dust, sunlight and even the scent of her husband Scott.
“Shortly after our wedding day… [My] favourite foods began causing such severe abdominal pain that I’d curl up on the floor, unable to move or leave the bathroom for hours. Daily migraines intensified, resulting in temporary vision loss and debilitating pain,” wrote Johanna in an article on The Gospel Coalition. “Instead of date nights, babies and family get-togethers, life became a relentless series of doctor’s appointments, medical tests, multiple diagnoses and hospitalizations, with no successful treatments.”
It took 30 doctors before Johanna was accurately diagnosed with MCAS. While most cases of MCAS are mild or even go undiagnosed, hers is so severe that prolonged exposure to allergens can kill her. And while most MCAS patients can lead a relatively normal life once the right balance of medications is found, Johanna’s body has been rejecting all treatments as her list of allergies continues to grow.
“There is no known cure for this disease, and its treatment is a complicated puzzle,” said Scott. “For two years, we have been trying various medications without success and recently under-went four rounds of chemotherapy in an attempt to stop her aggressive case. Unfortunately, chemo was not enough to reign in her broken body, and we are still praying for a treatment that will heal her.”
Due to her life-threatening condition, Johanna remains within the confines of her bedroom, a “safe zone” that Scott created for his wife. The room is wrapped in plastic and the doors and windows are sealed, no sunlight enters the room and there are air purifiers everywhere. Johanna spends her day reading psalms, praying, talking to family on Skype and sending emails. The only times she leaves her room is for emergencies and scheduled doctor visits.
“As soon as that door opens, I can feel it. My body goes into complete attack mode,” Johanna said. “It feels like my body is waging war on itself. My throat automatically tightens. It kind of feels like Darth Vader doing a choke hold,” she told Fox 9.
The couple aren’t the only ones involved in their unusual lifestyle, they have a great support group of friends and neighbours behind them as well.
Scott and Johanna currently live in their friend’s Dan and Lucy Olson’s house, who despite having four children under the age of 10, welcomed the couple into their home. Meanwhile, the couple’s current home is being renovated to ensure a safe space for Johanna.
Johanna occupies the master bedroom at the Olsons while Scott lives in a bedroom downstairs. Dan and Lucy stay in a separate bedroom and their four children share a room, but that’s not the only sacrifice the Olsons made.
Johanna became extremely sensitive to odours, so the Olsons could no longer cook in their own kitchen. Instead, they’d eat out or cook in their neighbours kitchens. The only food that can be cooked in the home is solely for Johanna.
All food prep is done by Scott who comes home every day from his teaching job to prepare the same two meals for Johanna. Since her body can only tolerate 15 different ingredients, including spices, she either eats beef chuck roast with organic celery, carrot and parsnip or organic lamb with turmeric, cinnamon and cucumber.
Despite the challenging circumstances, the couple remain hopeful for a cure. The two are currently raising money on GoFundMe to help with renovations and are grateful for all the help received so far.
“Every time I come back from those appointments, I feel grateful – just extremely grateful,” Johanna said. “For everyone’s help to me. And the fact that I made it, and I’m back and I got another day.”
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