(KMSP) - Imagine being allergic to just about everything; so much so you have to live in isolation. That's the life of 29-year old Johanna Watkins, who has been living within the confines of a master bedroom 24/7 for about a year now.
The windows are sealed, the room is wrapped in plastic. There's no sunlight and there are purifiers everywhere. She stays where she feels the safest. Johanna's husband, Scott, has built a sort of "safe zone" for his wife. But here's what's hard to believe: While Johanna is allergic to food, chemicals, the outdoors, dust and hundreds of other things, she is also allergic to the scent of most people, including her husband.
"I can't get too close," Scott explained. "I can't hug her safely. I can't hug her without hurting her."
So while she lives upstairs, her husband stays in a room downstairs. The only time Johanna leaves the room is for emergency room visits and scheduled doctor visits. Wearing masks, Scott whisks her out of her room to the car and quickly drives to the hospital for a quick appointment. By the time she gets home, she is exhausted and her body feels like it's being attacked.
"As soon as that door opens, I can feel it. My body goes into complete attack mode," Johanna said. "It feels like my body is waging war on itself. My throat automatically tightens. It kind of feels like Darth Vader doing a choke hold."
But she recovers enough to feel stable and safe. She spends her days reading books, reading psalms, praying, talking on the phone, sending emails and thinking of what she can do for others.
"I try to just think of everyone I can and just pray for them personally -- just pray for whatever they need," Johanna said. "And I feel too that that's a way I feel connected to people."
So what is the disease? After 30 doctors misdiagnosed Johanna, Dr. Lawrence Afrin at the University of Minnesota diagnosed her with mast cell activation syndrome. Mast cells exist throughout our bodies. They release chemicals that tell our immune system how to react. But Johanna's mast cells release the wrong chemicals, to the wrong place, at the wrong time. To put it simply, her mast cells are haywire. The first diagnosis was only 9 years ago, so there hasn't yet been a lot of research on MCAS.
"We're just entering a new era here where physicians just need to be aware that there's a new kid on the inflammatory block so to speak," Dr. Afrin said. "So when they see a patient who has multiple inflammatory problems, they're having a hard time putting the whole package together and having a hard time finding effective therapy. It becomes reasonable now that we understand that a disease like MCAS exists -- it becomes reasonable to consider the possibility that what the patient might have as a unifying sort of underlying diagnosis might be mast cell activation disorder."
Research shows that one to 15 percent of the general population could have MCAS, but most are undiagnosed. Instead they're told they have multiple inflammatory disorders like fibromyalgia, irritable bowel syndrome, chronic fatigue and other conditions. The good news is that if a patient is diagnosed with mast cell disorder they are usually treatable with a cocktail of medication. Unfortunately though, Johanna Watkins is on the other end of the spectrum. Her case is severe, rare and she has so far not responded to any treatment.
With her MCAS, her body reacts to her allergies in a number of ways like rashes, inflammation, bone pain and passing out, but most of the time it's anaphylaxis. Her throat tightens and she can't breathe. Being around her allergens too long can actually kill her. The only people she doesn't react to are her brother and sister. They visit her every week.
Scott Watkins says it may sound hopeless to some people, but it's not.
"I could complain about it or not want it and there are times where of course we don't want it, but it's what we have and we have we feel like we couldn't have asked for a better group of people around us," Scott said.
Although Johanna lives alone, she is not alone. There is a community helping her stay safe and stay alive. For one, the house where the Watkins family lives doesn't belong to them. They were invited to stay there by Dan and Lucy Olson. The Olsons have 4 children under the age of 9 but welcomed the Watkins family into their home.
"I think it has made the children brave," Lucy said. "Because when they struggle with fears or at bedtime worries we talk about Johanna and even when bad things happen, even when the worst things happen, God is enough for her."
Now, Johanna lives in their master bedroom, and Scott in a downstairs bedroom. Dan and Lucy stay in one bedroom and the 4 children share a bedroom. But there have been other sacrifices as well. Several months ago, Johanna became so sensitive to odors, the Olsons could no longer cook in their own kitchen. So, 5 neighbors gave them keys to their homes so they can cook dinner in their kitchens instead. The Olsons eat at a picnic table out on the porch, or go out to eat. The only food that is cooked inside the home now is for Johanna. Scott spends hours a day cooking the few things Johanna can eat: ground lamb, chuck roast, cucumbers and carrots. Johanna is allergic to every other food, and she can only drink water. She has been eating the same thing for a year now.
But Scott hopes to cook in his own home very soon. He is renovating a home so that he has an apartment upstairs and she has a safe haven downstairs. With the help of volunteers and donations their new home is about to become a reality. The Watkins family hopes to move in sometime in December. While being Johanna's caretaker and renovating a home, Scott is also a second grade teacher at Hope Academy. Johanna is very aware of the love that surrounds her and is grateful for all of it.
"Every time I come back from those appointments, I feel grateful - just extremely grateful," Johanna said. "For everyone's help to me. And the fact that I made it, and I'm back and I got another day."
HOW YOU CAN HELP: Donate at https://www.gofundme.com/johannawatkins