The progressive condition — for which there is no known cure — makes Watkins severely allergic to almost everything. Unlike many people who may be allergic to one or two items (such as cats or shellfish), the list of allergens that elicit a powerful reaction in Watkins's body stretches into the hundreds.
The extensive list, according to People, has turned her life into a minefield of allergens and includes foods, scents, toothpaste, chemicals, environmental triggers and body odors produced by most people — including her husband.
With her condition worsening in recent years and the list of allergens growing increasingly long, Watkins has been forced to confine herself to a single master bedroom fitted with an "airlock and HEPA [high efficiency particulate air] air filters” where Watkins can safely avoid contact with the outside world, Watkins's husband, Scott, told People. The windows in the room are sealed, Fox affiliate KMSP reported, and the space is "wrapped in plastic.”
The husband and wife are unable to see each other, not even to trade a simple hug. If Watkins is triggered by an allergy, she can go into anaphylactic shock and has already been hospitalized numerous times.
“Johanna hasn’t left her room in a year except to go to the hospital,” Scott told People. “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.”
Watkins remains a prisoner of her own condition. She told KMSP that she spends her days reading the Bible, sending emails and chatting on the phone. She credits her religious faith with giving her the strength to get through the day, but she remains vigilant.
She told KMSP that as soon as her bedroom door opens, she “can feel it.”
“My body goes into complete attack mode,” she said. “My throat automatically tightens. It kind of feels like Darth Vader is doing his chokehold.”
For now, KMSP reported, Watkins's body still tolerates the presence of her two siblings, who work as their sister's caregivers. Anyone who encounters Watkins is required to use a special scent-free soap and make sure to avoid garlic, onions and pepper in their diet.
Watkins told the station that she is so sensitive to smells that she began to react to a small GoPro camera that her brother used to film her living conditions for the station.
Most cases of MCAS are treatable with medication, but the condition's symptoms manifest in so many ways it can be difficult to diagnose, according to Thanai Pongdee, an allergenic disease expert who works with the Mayo Clinic. The diagnosis is only about a decade old, Pongdee said, noting that the medical community considers its understanding of the condition “a work in progress.”
Watkins told People that he and his wife visited as many as 30 doctors who offered plenty of misdiagnoses before they were able to confirm that she has MCAS.
“It can affect everything from going to the grocery store to going to work or going outside,” Pongdee said. “Hopefully, they can get good care and get on a right medication regiment to minimize those kind of symptoms. People can get better, but the first thing to do is actually get the appropriate diagnosis, which can be challenging.”
The couple is temporarily living in a home owned by friends in Minneapolis named Dan and Lucy Olson, who have four children under age 9, KMSP reported. Watkins has taken refuge upstairs and her husband lives in a basement bedroom. To keep their guest safe, the Olsons agreed to stop cooking, eating and using scented household products inside their own home.
“When she developed a sensitivity to food smells and asked us to stop bringing hot food into the house and cooking in the house, within a week five neighbors had given me keys to their house and their kitchens,” Lucy Olson told KMSP.
“To see him carrying her food up and putting it through the door — night after night, coming home to cook for hours the special food to keep her alive — I think it has made my children feel brave,” Olson added, referring to Scott's dedication to his wife.
The entire neighborhood has rallied behind the couple and have gone as far as giving up outdoor barbecues because residents know the wafting fumes could put Watkins's health at risk.
“They’ve given up grilling and campfires because they know how sick my wife is,” Scott told People. “We’ve received so much support.”
That support has continued online, where the couple started a GoFundMe page in July to raise money for a permanent residence of their own. The couple say they have closed on a home and are raising money to renovate the residence, turning it into “a safe living space,” according to their GoFundMe page. Scott will live in an apartment on the second floor of the new home. A large portion of the renovations are aimed at creating a kitchen that is allergen-free and capable of being used by caregivers to prepare her specialty diet.
Including spices, Watkins is only able to tolerate about 15 foods. She eats a single organic meal each day that consists of grass-fed beef, parsnips, celery and carrots or ground lamb with cucumbers, according to People.
“I have been eating these same two meals for over a year of my life, and they still taste good to me,” Watkins told People. “I love to eat — it’s a joy for me. It’s just a gift that I can keep eating these foods.”
To date, with donations from more than 340 people, the couple have raised nearly $113,000 of their $118,000 goal. They're hoping to move into the new residence next month, KMSP reported. Once there, Watkins plans to continue looking for a medication that will lead to her recovery.
Because she cannot express her thanks in person, Watkins creates YouTube videos to express her gratitude to her growing network of supporters. She told viewers that the idea of raising more than $100,000 for a home online initially "felt like an impossible dream.”
Now that the couple are preparing to move in, she said, the home has become a reminder that physical isolation doesn't have to mean being alone.
"Every time I look at that home and I'm in that house, I will feel surrounded because I will have a constant reminder of love,” Watkins said.
“It’s been very painful,” her husband told People. “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.”