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Johanna Watkins, 30, is allergic to almost everything and everyone, including her husband Scott, 29. She’s been diagnosed with mast cell activation syndrome, a rare and progressive immunological condition that has forced her to live in isolation in their home, in Minneapolis. Here, Scott shares their story with TODAY.
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Our life constantly feels like a crisis. Johanna's immune system is just totally misfiring. It’s, at this point, irreversibly broken. She’s at the whims of her body. This is a killer disease and her form of it is insane.
When we first started dating in 2012, she started to develop sensitivities to a lot of things people are allergic to — gluten, dairy — things that wouldn’t be very uncommon. But her symptoms slowly became worse and her allergies really accelerated when we got married in 2013. Two years ago, it just started getting out of control.
We’ve been seen by dozens and dozens of doctors. None of them knew what was wrong. She’s been hospitalized multiple times.
We finally got some answers from Dr. Lawrence Afrin at the University of Minnesota. Johanna was diagnosed with mast cell activation syndrome in January 2014. Now we know the name of this disease, which doesn’t mean we know the answers. But when things hurt you and you don’t know what they are, that’s much more bewildering than when you at least know what’s hurting you.
With this disease, the systems your body has that are supposed to protect you, are actually hurting you. Johanna’s severity is one of a kind. She has it in an exquisitely horrible way. It’s a hellish experience. She’s constantly almost entering anaphylaxis (a severe, potentially life-threatening allergic reaction).
If we control her environment perfectly, her disease doesn’t get worse, so she’s been isolated for over a year. Most people, when their throat starts to close in, they go to the emergency room. But Johanna’s throat is always tight, her body always hurts — that’s just her normal everyday life because these cells are identifying everything as a threat.
She has a list of 15 foods she can eat and that’s it. Even those foods make her feel ill, it’s just that they don’t kill her.
She’s eaten the same two meals for two years. I make them every other day. One consists of a grass-fed chuck roast with carrots, celery, salt and steamed mashed parsnips. The other is a cucumber noodle salad, made with cucumbers, lemon, carrots, capers, cilantro and kiwi. I add ground lamb with turmeric and cinnamon and salt. Those are the only two meals her body tolerates.
She’s allergic to everyone, except her closest genetic relatives — her siblings. Not even her parents can get close. She gets sick when I’m around her. If I stayed around her for more than 15 minutes, there’s a decent chance she would go unconscious and I’d have to bring her to the ER. Who would ever think that your presence would hurt someone?
She has the main floor of the house: dining room, living room, bedroom, bathroom and sun room. I wanted to give her the best part of the house because she never leaves, and when you’re stuck in one place for the foreseeable future, I want her to have a beautiful space.
We have her space pressurized because drops in pressure can trigger her mast cells to hurt her. There’s an air lock outside of her door, plus special filtration, insulation and seals. I live upstairs and never enter her space. I do sometimes see her through glass as she’s on a couch and I’ll wave to her. It’s hard for me to see her because she’s so sick. Also, because I love her so much and I can’t be with her, seeing her doesn’t fulfill all those missing pieces of our relationship.
We haven’t kissed in about a year and a half, maybe two years. We talk on the phone all the time. We watch shows together — she watches the show on her TV and I watch the show on mine.
Sickness wears on your body and soul, so she’s tired. Her life hangs by a thread and she’s aware of that. Physically, her body is a disaster. She can’t walk without help. She weighs 90 pounds because her body is so weak. Her daily life is full of pain and suffering. She always feels like she’s breathing through a straw. Her normal level of pain is most people’s highest level.
Psychologically, she’s the world’s healthiest woman. She’s the strongest woman I know. She has faith and hope and takes joy in what she can each day. I’m just immensely proud of her. She’s amazing.
We believe with all of our hearts that God is in control of this situation and our faith carries us. There are a million ways she could look at her life or I could look at mine and say “Woe is me,” but that doesn’t fix anything and it doesn’t lead to happiness. There are many times I’ve been so angry at what has happened, but I don’t stay there, I don’t live in that.
We have joy in our days. There’s sadness, too, but we move on.
The couple has set up a fundraising page for medical expenses.
This story was originally published in February 2017.