Imagine, for a moment, that you could not kiss your beloved spouse or even be near them because they could die. That your very scent could send them into anaphylaxis. As unimaginable as this may seem, it’s a reality for 29-year-old Johanna Watkins and her husband Scott.
Johanna suffers from Mast Cell Activation Syndrome (MCAS), a rare immune disorder where the cells which are meant to protect from outside threats mutate and start attacking the body instead. Symptoms of MCAS vary, but for Johanna the disease makes her allergic to nearly everything — including her husband’s scent. Being exposed to a trigger could send her into anaphylactic shock and kill her.
As a result, Johanna and Scott’s once normal life together has drastically been altered.
“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,” Johanna told PEOPLE.
Their Life Was Not Always Like This
Scott and Johanna first met in 2011. They were both teachers at a school in Minneapolis, Minnesota. From the first sight of her, Scott knew there was something special about Johanna.
“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 said. “…We noticed each other right away and I took way too long to ask her out.”
Young and in love, they married in 2013 and began planning their future together. But little did they know their plans would have to be put on hold, maybe indefinitely.
“After we got married, we wanted to have kids,” Johanna told PEOPLE. “I’d always wanted to be a mom and I thought I would be one. We made so many plans.”
Even before they were married, Johanna struggled with rashes, irritable bowel syndrome and migraines, but the couple could not even image that her symptoms were signs of something far worse to come.
“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.
Johanna’s symptoms continued to worsen. She went to 30 doctors hoping to find answers, but instead received a slew of misdiagnosis. It wasn’t until 2015 when she saw Dr. Lawrence Afrin at the University of Minnesota that she finally received the correct, albeit devastating, diagnosis — she had MCAS.
“When Dr. Afrin told us he thought he knew what she had we both broke down crying,” Scott said. “She had thought for the longest time that she must be going crazy.”
After her diagnosis, Johanna underwent chemotherapy and was prescribed various medications, but her body hasn’t responded to any of the treatment — in fact, she’s gotten worse.
Living With MCAS
During one of the many visits to the hospital, Johanna and Scott’s apartment had some water damage that turned into mold. Exposure to the mold could kill Johanna, so they were forced to vacate. The couple moved in with friends. Johanna was confined to the master bedroom while Scott slept in a bedroom downstairs.
“It’s been very painful,” Scott said. “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 is only able to tolerate 15 different foods, including spices. She can only eat once a day, and it’s always one of two meals: organic grass-fed beef with water, celery and carrots 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,” Johanna said. “I love to eat — it’s a joy for me. It’s just a gift that I can keep eating these foods.”
However, as her sensitivity to odors increased, Scott was no longer able to prepare her meals in the same home. Luckily, a few kind neighbors let Scott use their kitchens to cook meals for Johanna.
Their neighbors had to make sacrifices, too. For instance, if one of them lit a barbecue, the smell will reach Johanna and she could enter early stages of anaphylaxis.
“They’ve given up grilling and campfires because they know how sick my wife is,” Scott said. “We’ve received so much support.”
Johanna’s visitors are limited to her siblings, who are the only people she does not have a life-threatening reaction to. However, before they can even enter the room they have to shower with a special soap, strip down to their underwear and put on masks and clothes that have never left Johanna’s room.
Even with these very precise precautions, Johanna’s symptoms still worsen after their visits.
Scott and Johanna knew they couldn’t stay at their friends’ place forever, so they purchased a home one mile away from the University of Minnesota East Bank Hospital. However, the 100-year-old home was in dire need of a renovation. With the help of volunteers and a GoFundMe campaign that’s already raised over $120,000, Scott was able to turn the home into two apartments, complete with a cutting edge air filtration system for Johanna.
After months of work, the house is almost ready, but the moving process also poses another large obstacle — especially since Johanna’s health has worsened, according to the couple’s GoFundMe page.
“The move-in will be much more complicated than a move would typically be,” Scott wrote on his GoFundMe page. “We will need to move furniture and certain items into the home in stages, and then let them ‘off-gas’ until the fewest scents and odors remain. We are being extra careful of the smells that could be inadvertently introduced to the positive pressure system. The move will happen in stages because of Johanna’s countless allergies, and we won’t move Johanna there until everything is ready.”
Yet with all these unimaginable obstacles, the young couple remains hopeful.
“We have been so showered with love and support – I know I have been deeply blessed,” Johanna 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.”