Minnesota Woman with Rare Syndrome Develops Allergies to Everything — Including Her Husband: 'It's Been Painful,' He Says
"Johanna hasn't left her room in a year except to go to the hospital," Scott Watkins says of his wife
When Scott Watkins met his future wife Johanna, it felt like fate.
"I met my wife five years ago at Hope Academy. She was a first grade teacher and I was a second grade teacher, so it really was destiny," Scott, 28, tells PEOPLE.
"We noticed each other right away and I took way too long to ask her out," he continues with a laugh.
When Scott finally worked up the nerve to ask Johanna out, they just clicked. After meeting in 2011, the Minneapolis, Minnesota, couple married in 2013 and began planning their life together.
"After we got married, we wanted to have kids," Johanna, 29, says. "I'd always wanted to be a mom and I thought I would be one. We made so many plans."
But before Scott and Johanna could fully begin their life together, the allergies Johanna had suffered all her life began getting much worse. In 2015, Johanna was diagnosed with Mast Cell Activation Syndrome, a rare genetic disorder that causes her body to develop life-threatening anaphylactic reactions to nearly everything.
To date, Johann has a list of hundreds of allergies, including many foods, scents, environmental triggers like pollen and the natural chemicals and body odors that people – including her husband – release. Now, in order to avoid a life-threatening allergic reaction, Johanna lives 24/7 in the confines of an air-locked bedroom.
"Johanna hasn't left her room in a year except to go to the hospital," Scott says. "The only way we've kept her alive is through extreme precautions – her room has an airlock on it, multiple HEPA filters and her windows are covered because even UV light can cause her cells to trigger. It really is crazy."
A Long Journey to Diagnosis
For years, Johanna sought answers about what was causing her to react to foods, smells and people to the point where she would develop migraines, body pain and an inability to breathe. After 30 doctors delivered countless misdiagnoses, Dr. Lawrence Afrin at the University of Minnesota diagnosed her with MCAS, a syndrome that was discovered only nine years ago.
"When Dr. Afrin told us he thought he knew what she had we both broke down crying," Scott recalls. "She had thought for the longest time that she must be going crazy."
MCAS causes the body's mast cells, which protect the body from disease and aid healing, to build up and function improperly. These cells react to certain triggers (in Johanna's case, nearly everything) and release chemicals that overwhelm the body, leading to anaphylaxis, a severe and potentially life-threatening allergic reaction.
With diagnosis came hope for treatment, but so far, Johanna's body hasn't responded to medications or chemotherapy. Instead, her symptoms continue to get worse.
At this point, her body only tolerates a total of 15 foods (including spices). She eats just once per day and it's always one of two meals she knows her body can tolerate: organic grass-fed beef (chuck roast cut) with water, celery and organic carrots and organic parsnips that are peeled, cored and mashed or ground lamb with peeled organic cucumbers.
"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."
Everyone who comes into contact with her must use a special scent-free soap, avoid all scented products and adhere to a diet free of garlic, onions and pepper.
If Johanna comes into contact with one of these triggers, her body goes into anaphylaxis.
"It attacks my throat and my lungs and I start coughing and I can't stop," she explains. "Then my vision will completely blur and my throat will become tight like Darth Vader is doing a chokehold on me. My whole body goes into intense pain and I get migraines so badly that they actually leave bruises on my head."
When this happens, she needs to be rushed to the emergency room, but the chemicals used in cleaning ambulances exacerbate her condition, so only Scott is able to drive her. The couple has made eight trips to the emergency room this year.
A Safe Haven
During one of her hospitalizations, the couple's apartment sustained water damage that turned into mold. This meant they had to find a new place to live – and fast.
Their friends Dan and Lucy Olson (whose daughter Elizabeth was a student in Johanna's first grade class) invited the couple to move in with them last October. Johanna lives in the master bedroom, while Scott sleeps in a bedroom downstairs and prepares Johanna's meals in a separate kitchen in the basement.
Dan and Lucy share a bedroom and their four children share another. When Johanna's sensitivity to odors increased, the Olsons had to stop preparing or eating foods inside the house. Several neighbors gave the Olsons keys to their homes and invited them to cook in their kitchens whenever necessary.
"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."
If a neighbor so much as lights a barbecue, the smell eventually reaches Johanna and causes her to enter the early stages of anaphylaxis. At this point, the whole neighborhood knows and takes great care to avoid anything that could hurt Johanna.
"They've given up grilling and campfires because they know how sick my wife is," Scott says. "We've received so much support."
A Marriage Transformed
While Johanna has been confined to her room for a year, she has been able to have a handful of visitors. Her body tolerates the natural scents of her siblings – as it did for her husband until he visited her after a haircut in January.
"He came home and he showered several times and put a mask on and put on clothes that we keep in my room," Johanna recalls. "About two minutes after he came into my room I went into anaphylaxis."
"At that point, we figured out that I had become allergic to my husband," she continues, tearing up at the memory. "It's been several months and it's still very sad."
"It's been very painful," adds Scott. "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."
Now, Johanna and Scott can only stay connected through Skype calls, emails, texts and watching TV programs together from different rooms on their laptops.
"I know this sounds totally bizarre because Johanna can only eat 15 things, but we love watching the Food Network," Scott says.
A Hopeful Future
While Scott works during the day (he still teaches second grade), Johanna keeps busy by making phone calls, writing emails, reading psalms and praying for the people in her life.
"I didn't pray much before this but now I try to pray for the people I know," she says. "It's my way of helping and it keeps me focused on things other than myself."
As the weather in Minneapolis continues its transition to winter, Johanna and Scott know the Olson family can't continue eating at a picnic table outside. With help from friends and a team of community volunteers, Scott has been renovating a home just one mile away from the University of Minnesota East Bank Hospital.
A GoFundMe page has already raised $100,000 to help Scott transform the 100-year-old home into two apartments – one with a state of the art air filtration system for Johanna and a second a space where he and her other caregivers can stay.
The couple needs just $15,000 more to complete their renovation. They hope to be able to move in to their new home by Christmas. "God has given us this home as a gift and we're excited to move into it," Johanna says.
After that, the couple is unsure what lies ahead. Johanna continues seeing Dr. Afrin in the hopes that they'll find a treatment that works. It's been a long, hard road but the couple is far from giving up hope.
"We have been so showered with love and support – I know I have been deeply blessed," she says. "This is really hard and it is painful, but we haven't been left to face it alone and that is a beautiful thing."
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