When Scott and Johanna Watkins got married back in 2013, they knew that Johanna was starting to develop some food sensitivities (mainly to common allergy foods such as gluten and dairy). What they never could have known, though, is that just one year later, she would be diagnosed with a rare disease called mast cell activation syndrome that would make her allergic to everything and everyone — her husband included.
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As Johanna's allergies became increasingly worse in the months leading up to and following their wedding, the Watkins began visiting expert after expert in an attempt to figure out what was wrong. In January 2014, they finally got the diagnosis from Lawrence Afrin, MD, at the University of Minnesota.
Not much is known about mast cell activation syndrome, but existing research tells us the following: We all have mast cells (a type of white blood cell), and these cells have the ability to release "mediators," which are chemicals that help your body regulate its various immune responses. When properly released, mediators will cause symptoms typically associated with a standard allergic reaction (think: hives, headache, nausea, and in the worst cases, anaphylaxis). But in someone with mast cell activation syndrome, these mediators are released inappropriately — and excessively.
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That's exactly what happened to Johanna. And because she has a particularly severe form of the disease, this means living in complete isolation. She's allergic to everyone except her closest biological relatives (her siblings), so she lives alone on the main floor of her and Scott's Minneapolis home, which is specially sealed and pressurized so as not to aggravate her symptoms and send her into anaphylaxis. She's been there, by herself, for the last year and a half while her husband stays the floor above.
"I live upstairs and never enter her space," Scott explained in an essay he wrote for TODAY. "I do sometimes see her through glass as she's on a couch, and I'll wave to her. It's hard for me to see her because she's so sick. Also, because I love her so much and I can't be with her, seeing her doesn't fulfill all those missing pieces of our relationship."
There are only 15 foods that Johanna can eat, so Scott makes her one of two meals every other day: a grass-fed chuck roast with steamed celery, carrots, and roasted parsnips; or a "cucumber noodle salad" with cucumbers, lemon, carrots, capers, cilantro, and kiwi. Even these pared-down recipes are tough on her body, Scott explained to TODAY — but they don't kill her.
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Scott and Johanna haven't kissed or even really spent much time together for the last year and a half, but they do watch the same TV shows together — coinciding but in separate rooms. The couple talks on the phone frequently, but they can't share the same space for more than a few minutes at a time.
"If I stayed around her for more than 15 minutes, there's a decent chance she would go unconscious and I'd have to bring her to the ER," Scott wrote. "Who would ever think that your presence would hurt someone?"
And the end of the day, though, despite Johanna's grim status (she now weighs less than 90 pounds, and "her body is a disaster," according to Scott), the Watkins manage to stay amazingly positive.
"She's the strongest woman I know," he wrote. "She has faith and hope and takes joy in what she can each day ... There's sadness, too, but we move on."
If you'd like to donate to help Scott and Johanna Watkins with their medical expenses, you can visit their GoFundMe page here.
[h/t TODAY
Heather Finn is the content strategy editor at Good Housekeeping, where she heads up the brand's social media strategy and covers entertainment news on everything from ABC's 'The Good Doctor' to Netflix's latest true crime documentaries.
