29-year-old Johanna Watkins suffers from an extremely rare condition which makes allergic to literally hundreds of things, including the scent of her husband. For the past year, she has been living alone in a specially-built “safe zone” of her house, and claims that every times she leaves this space her body “goes into attack” mode.
Johanna met her husband Scott five years ago, at Hope Academy, in Minneapolis, Minnesota, where she worked as a first grade teacher Scott as a second grade teacher. They got married in 2013 and started making plans about their life together, but just two years into their marriage, the allergies that Johanna had suffered from all her life started getting considerably worse. At first they though it was just food allergies, and changed their diet, but that didn’t help. In 2015, she was diagnosed with Mast Cell Activation Syndrome (MCAS), a rare genetic disorder that causes her body to develop life-threatening anaphylactic reactions to virtually everything.
MCAS causes mast cells, which release chemicals that tell our immune system how to react to various stimuli, to build up and go haywire. Basically Johanna’s mast cells release the wrong chemicals, to the wrong place, at the wrong time. The cells react to all sorts of triggers, releasing chemicals that overwhelm the body, leading to anaphylaxis. Unfortunately, the condition was discovered just nine years ago, so little is known about it.
It is estimated that 1 – 15 percent of the world’s population could be suffering from Mast Cell Activation Syndrome, but while in most cases the allergic reaction is mild, Johanna’s condition is so severe that her body hasn’t responded to medications or chemotherapy, and the symptoms continue to get worse.
At this point, Johanna’s body can only tolerate 15 foods (including spices). She only east once a day and it’s always one of just two meals that she knows will not cause an allergic reaction: organic grass-fed beef with water, celery and organic carrots and organic parsnips that are peeled, cored and mashed, or ground lamb with peeled organic cucumbers. The 29-year-old doesn’t complain about the lack of diversity in her diet, though. “I have been eating these same two meals for over a year of my life and they still taste good to me,” she says. “I love to eat — it’s a joy for me. It’s just a gift that I can keep eating these foods,” she says.
But foods make up just a tiny portion of the plethora of things that cause Johanna to develop allergic reactions. The scent of people is also one of them, so everyone who comes into contact with her must use a special scent-free soap, avoid all scented products and adopt a diet free of onions, garlic and pepper. That doesn’t always help, though. Up until January, her body tolerated her husband, if he followed the above stated rules, but not anymore. “He came home and he showered several times and put a mask on and put on clothes that we keep in my room. About two minutes after he came into my room I went into anaphylaxis,” Johanna recalls about the sad day Scott came home after getting a haircut. “At that point, we figured out that I had become allergic to my husband.”
Since then, Scott hasn’t been able to get close to his wife without hurting her. They sleep in separate rooms, and communicate through Skype calls, emails, texts. “It’s been very painful, Scott says. “But when you can’t see the person you love you have to do things more intentionally. Through this, my love for my wife has grown.”
Johanna’s condition forced her and Scott to leave their home last year. During one of her many emergency hospitalizations, their apartment was flooded and the water damage that turned into mold forced them to find another place to live. Luckily, their friends Dan and Lucy Olson invited them to live in their house last October and they’ve been there ever since. Johanna lives in the master bedroom, while Scott sleeps in a bedroom downstairs. Lucy and Dan share a bedroom, and their four children share another.
When Johanna’s MCAS worsened a few months ago, the Olsens had to stop cooking in their kitchen, because the odour would reach her safe space and make her sick. Luckily, some of the neighbors gave them keys to their homes so they could cook in their kitchens, when they needed to. In fact, the whole community has been very supportive of Johanna. After learning that the smoke and smell of the barbecues caused her to go anaphylaxis, they’ve stopped grilling and making campfires to protect her. “We have such a great community around us,” Scott says. “Our life is strained because Johanna is so sick but we’ve only been able to do as much as we can because of the sacrifices from our community”
But the young couple know that their friends can’t keep using other people’s kitchens and eat outside at the picnic table, not with winter just around the corner. So Scott has been renovating an old house, and started a crowdfunding campaign for $100,000 to add some needed features, like a state of the art air filtration system. They hope to move into their new home by Christmas.
Johann continues to see her doctor, in the hopes of finding a treatment that actually works, but there are no guarantees. However, she remains brave and positive. “We have been so showered with love and support – I know I have been deeply blessed,” she said. “This is really hard and it is painful, but we haven’t been left to face it alone and that is a beautiful thing.”