Woman's Rare Disease Makes Her Allergic to Everything — Including Her Husband

If Scott and Johanna were in the same room for more than 15 minutes, chances are she would lose consciousness.

More From Personal Stories
20 articles
life after a mastectomy
What It's Like to Live With One Breast
jesi payne
I Was Slowly Becoming Paralyzed
what it's like to live with a facial deformity
What It's Like to Live With Treacher Collins

When Scott and Johanna Watkins got married back in 2013, they knew that Johanna was starting to develop some food sensitivities (mainly to common allergy foods such as gluten and dairy). What they never could have known, though, is that just one year later, she would be diagnosed with a rare disease called mast cell activation syndrome that would make her allergic to everything and everyone — her husband included.

Advertisement - Continue Reading Below

More From Personal Stories
20 articles
life after a mastectomy
What It's Like to Live With One Breast
jesi payne
I Was Slowly Becoming Paralyzed
what it's like to live with a facial deformity
What It's Like to Live With Treacher Collins
emma-leibow-neurofibromatosis-dancing
Inspiring 7-Year-Old Has More Than 30 Tumors
buzzfeed writer sugar detox
This Woman Gave Up Sugar for 30 Days

As Johanna's allergies became increasingly worse in the months leading up to and following their wedding, the Watkins began visiting expert after expert in an attempt to figure out what was wrong. In January 2014, they finally got the diagnosis from Lawrence Afrin, MD, at the University of Minnesota.

Not much is known about mast cell activation syndrome, but existing research tells us the following: We all have mast cells (a type of white blood cell), and these cells have the ability to release "mediators," which are chemicals that help your body regulate its various immune responses. When properly released, mediators will cause symptoms typically associated with a standard allergic reaction (think: hives, headache, nausea, and in the worst cases, anaphylaxis). But in someone with mast cell activation syndrome, these mediators are released inappropriately — and excessively.

That's exactly what happened to Johanna. And because she has a particularly severe form of the disease, this means living in complete isolation. She's allergic to everyone except her closest biological relatives (her siblings), so she lives alone on the main floor of her and Scott's Minneapolis home, which is specially sealed and pressurized so as not to aggravate her symptoms and send her into anaphylaxis. She's been there, by herself, for the last year and a half while her husband stays the floor above.

"I live upstairs and never enter her space," Scott explained in an essay he wrote for TODAY. "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."

There are only 15 foods that Johanna can eat, so Scott makes her one of two meals every other day: a grass-fed chuck roast with steamed celery, carrots, and roasted parsnips; or a "cucumber noodle salad" with cucumbers, lemon, carrots, capers, cilantro, and kiwi. Even these pared-down recipes are tough on her body, Scott explained to TODAY — but they don't kill her.

Scott and Johanna haven't kissed or even really spent much time together for the last year and a half, but they do watch the same TV shows together — coinciding but in separate rooms. The couple talks on the phone frequently, but they can't share the same space for more than a few minutes at a time.

"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," Scott wrote. "Who would ever think that your presence would hurt someone?"

And the end of the day, though, despite Johanna's grim status (she now weighs less than 90 pounds, and "her body is a disaster," according to Scott), the Watkins manage to stay amazingly positive.

"She's the strongest woman I know," he wrote. "She has faith and hope and takes joy in what she can each day... There's sadness, too, but we move on."

If you'd like to donate to help Scott and Johanna Watkins with their medical expenses, you can visit their GoFundMe page here.

[h/t TODAY]

More from Dr Oz The Good Life:
emma-leibow-neurofibromatosis-dancing
Conditions
Share
Nothing Will Stop This 7-Year-Old From Living Out Loud, Not Even 30+ Tumors in Her Leg and Brain
buzzfeed writer sugar detox
Nutrition
Share
This Woman Gave Up Sugar for 30 Days and Ate the Most Delicious Meals While Doing It
dad with cancer stages future milestones photo shoot with his kids
Conditions
Share
Dad With Cancer Stages Future Milestones With His Kids as He Gets Ready to Say Goodbye
david-dow-healing-the-broken-brain
Conditions
Share
I Had a Stroke at Age 10 and Was Supposed to Spend the Rest of My Life in a Nursing Home
howard triplets born with craniosynostosis
Conditions
Share
These Adorable Triplets Are Beating the Odds and Overcoming Their Rare Birth Defect
interstitial cystitis
Conditions
Share
My Overactive Bladder Turned Out to Be an Incurable Condition
lulu gilreath scalped by carnival ride: one year later
Health
Share
One Year After Being Scalped on a Carnival Ride, 12-Year-Old Opens Up About Her Ongoing Recovery
paralyzed dad cole thomas walks again
Conditions
Share
Just Seven Months After a Car Accident Paralyzed Him, This Dad Learned to Walk Again
jessica-melore-chemo-treatment
Conditions
Share
After a Heart Attack, Heart Transplant, Leg Amputation, and Two Bouts of Lymphoma, I Didn't Think I Had Anything Left to Lose — I Was Wrong
i survived an abusive relationship
Wellness
Share
I Was An MMA Fighter — And a Victim of Domestic Abuse