A young married couple is grappling with the challenges of a rare disease that necessitates Johanna Watkins, 30, to live in isolation from her husband Scott, 29, and others. Johanna suffers from mast cell activation syndrome, an uncommon and progressive immune disorder that has confined her to a controlled environment in their Minneapolis home. Here, Scott shares their ordeal with TODAY.
“Our life constantly feels like a crisis,” Scott explains. “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 they began dating in 2012, Johanna developed sensitivities to common allergens like gluten and dairy, but her condition escalated after their marriage in 2013. “Two years ago, it just started getting out of control,” Scott recalls. They consulted numerous doctors without success, leading to multiple hospital visits.
It wasn’t until they met Dr. Lawrence Afrin at the University of Minnesota that they received a diagnosis in January 2014: mast cell activation syndrome. “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,” Scott reflects on the partial relief of having a diagnosis.
In Johanna Watkins’ case, the body’s defense mechanisms are paradoxically causing harm. Her condition, mast cell activation syndrome, is exceptionally severe, leading to a life that feels like a living nightmare. She’s perpetually on the brink of anaphylaxis, a severe allergic reaction that could be fatal.
To manage her symptoms, Johanna has been isolated for over a year. Normally, when someone feels their throat constricting, they’d rush to the ER, but for Johanna, this is her daily reality. Her throat is always tight, her body in constant pain because her mast cells perceive everything as a threat.
Her diet is severely restricted to just 15 foods, which, while not lethal, still cause discomfort. For two years, she’s consumed only two alternating meals: one is grass-fed chuck roast with vegetables and mashed parsnips, the other a cucumber noodle salad with lamb, tailored to be the only foods her body can tolerate.
Johanna is allergic to nearly everyone except her siblings, due to genetic similarities. Even being around her husband Scott for more than 15 minutes could lead to a severe reaction necessitating emergency care. The emotional toll of his presence being harmful is profound.
Her living space is on the main floor of their home, designed for comfort since she can’t venture outside. The area is pressurized to prevent pressure drops that could trigger her symptoms, with an airlock, special filtration, and seals. Scott lives upstairs, never entering her space, but they communicate through glass or over the phone, watching TV shows together from different rooms.
They haven’t kissed in nearly two years. The physical separation is tough, but they maintain their connection through conversation and shared activities.
Johanna’s physical condition is dire; she can’t walk without assistance, has lost significant weight, and lives in constant pain, feeling like she’s always breathing through a straw. However, her psychological resilience is remarkable. She remains optimistic and strong, finding joy in what she can, which Scott finds incredibly inspiring.
Their faith plays a crucial role in coping with this ordeal. They trust that a higher power is overseeing their situation, avoiding the trap of self-pity, which they see as unproductive. Despite moments of anger and frustration, they focus on living with hope and positivity, acknowledging the strength it takes to face such adversity.