Imagine having allergies so severe that the scent from a pizzeria a mile away could give you severe reactions. Or being so allergic to nearly all spices that you’ve been limited to two dishes in the last year. Beyond all of this, imagine an allergy so tragic that you can’t even kiss your husband because his scent may send you into anaphylactic shock. For Johanna Watkins, she doesn’t have to imagine any of this because this is her reality.
Johanna Watkins is diagnosed with a most severe form of Mast Cell Activation Syndrome (MCAS). This immunological condition prompts the mast cells - a type of white blood cell - to attack the body excessively in response to inappropriate triggers. In Johanna’s case, her body appears to deem nearly everything around her as an allergen. And exposure to these allergens can trigger deadly anaphylactic shock.
MCAS has always been severe for Johanna. She “had reacted to [her] parents, [and] to many, many other people.” When it came to Scott - her husband whom she married in 2013, she experienced rashes, migraines, and other malaise when he was around. "There were times three and four years ago, before we got the diagnosis, that if I was extra close to my wife, specifically if my face was close to Johanna's face, she would cough," said Scott.
But over the course of last year, her symptoms became worse in response to being near her husband. "We had noticed that when Scott would come in [to the room] I would start feeling worse and worse. My normal daily symptoms would just be aggravated," said Johanna. "And then at one point he went to get his haircut and came back in the room and within two minutes I had started my anaphylactic symptoms and he had to leave."
Johanna’s MCAS has not responded to any available treatment, including chemotherapy. For now, she stays confined in the attic of a friend’s home while her own home is being specially fitted for her condition. In particular, the windows and doors have to be perfectly sealed, and the air coming into the room has to be purified.
In contrast to a few years ago, Johanna and Scott can’t even be in the same room together now due to her severe sensitivity to him. But thanks to technology, they are able to communicate and “see” each other, even if they can’t be together physically. "Scott and I will try to watch a show together. We can't be in the room together, because I'm allergic to him, but he will be three floors below me in a room on his laptop and I will be on mine and we'll watch the show at the same time and then text about it as we're watching it," said Johanna.
Despite the tragic nature of Johanna’s condition, both husband and wife promised to uphold their vows and support each other. "There's not an easy way around this problem. I want to keep Johanna safe and me going to see her compromises her safety," said Scott. "One of the ways I can take care of her now is by not going to see her. I'm not going to endanger her life. We're absolutely committed to one another and we're going to wait as long as it takes to see if there is some kind of healing."
Additional sources: BBC