A young married couple is taking care of a rare condition that pressures her to live in isolation indigenous him and other people.

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Johanna Watkins, 30, is allergy to almost everything and also everyone, consisting of her husband Scott, 29. She’s been diagnosed with mast cabinet activation syndrome, a rare and progressive immunological problem that has forced her to live in isolation in their home, in Minneapolis. Here, Scott shares their story through priziv.org.


Our life constantly feels prefer a crisis. Johanna"s immune device is just entirely misfiring. It’s, at this point, irreversibly broken. She’s at the whims of she body. This is a killer an illness and her kind of it is insane.

When we an initial started dating in 2012, she started to build sensitivities come a most things civilization are allergic to — gluten, dairy product — points that i will not ~ be really uncommon. However her symptoms slowly came to be worse and also her allergies really increased when we obtained married in 2013. Two years ago, it just started obtaining out that control.

We’ve been seen by dozens and also dozens that doctors. None of them knew what was wrong. She’s been hospitalized many times.

We ultimately got some answers from Dr. Lawrence Afrin at the college of Minnesota. Johanna was diagnosed v mast cell activation syndrome in January 2014. Now we understand the surname of this disease, i m sorry doesn’t typical we recognize the answers. But when things hurt you and you don’t understand what castle are, that’s much much more bewildering than when you in ~ least know what’s hurting you.

Johanna, in happier and also healthier days.Courtesy Scott Watkins

With this disease, the systems your body has actually that are supposed to defend you, space actually hurting you. Johanna’s severity is one of a kind. She has actually it in one exquisitely awful way. That a hellish experience. She constantly nearly entering anaphylaxis (a severe, perhaps life-threatening allergic reaction).

If we manage her setting perfectly, her condition doesn’t obtain worse, therefore she’s been isolated because that over a year. Many people, as soon as their neck starts to close in, they walk to the emergency room. Yet Johanna’s throat is always tight, her body constantly hurts — that’s just her normal day-to-day life because these cells room identifying everything as a threat.

She has actually a list of 15 foodstuffs she deserve to eat and also that’s it. Also those foods make her feel ill, it’s simply that castle don’t kill her.

She’s consumed the same two meals for 2 years. Ns make them every various other day. One consists of a grass-fed lining roast v carrots, celery, salt and also steamed mashed parsnips. The various other is a cucumber noodle salad, made with cucumbers, lemon, carrots, capers, cilantro and also kiwi. I include ground lamb v turmeric and also cinnamon and salt. Those are the just two meals she body tolerates.

She’s allergic to everyone, other than her closest genetic relatives — her siblings. Not even her parents can get close. She it s okay sick as soon as I’m about her. If i stayed approximately her for much more than 15 minutes, there’s a decent chance she would certainly go unconscious and also I’d have actually to lug her come the ER. Who would ever think that your presence would ache someone?

Johanna has been hospitalized plenty of times and has undergone chemotherapy, yet there's quiet no therapy for the disease.Courtesy Scott Watkins

She has actually the main floor that the house: dining room, living room, bedroom, bathroom and sun room. I want to offer her the best part of the house due to the fact that she never ever leaves, and also when you’re grounding in one place for the foreseeable future, I want her to have actually a beautiful space.

We have her an are pressurized because drops in pressure can create her mast cells to ache her. There’s an waiting lock external of her door, plus one-of-a-kind filtration, insulation and seals. I live upstairs and also never get in her space. Ns do sometimes see her v glass together she’s top top a couch and also I’ll tide to her. It’s difficult for me to watch her because she’s for this reason sick. Also, since I love she so much and I can’t be through her, seeing her doesn’t meet all those missing pieces of our relationship.

We can not use kissed in about a year and a half, possibly two years. We talk on the phone all the time. Us watch shows together — she watches the display on she TV and also I clock the display on mine.

Scott generally renovated the couple's home to make it livable because that Johanna. You have the right to see she in the background, sitting on a couch in her living room downstairs. Scott stays upstairs.Courtesy Scott Watkins

Sickness attract on your body and soul, so she’s tired. Her life hangs by a thread and she’s mindful of that. Physically, her body is a disaster. She can’t walk without help. She weighs 90 pounds since her human body is therefore weak. Her everyday life is full of pain and suffering. She always feels like she’s breathing with a straw. Her typical level of pain is most people’s greatest level.

Psychologically, she’s the world healthiest woman. She the the strongest woman ns know. She has actually faith and hope and takes delight in what she can each day. I’m just immensely proud that her. She’s amazing.

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Scott dead Johanna. He have the right to only be around her because that a couple of minutes.Courtesy Scott Watkins

We believe with all of our hearts that God is in manage of this situation and our confidence carries us. There space a million means she might look at her life or I might look in ~ mine and say “Woe is me,” yet that doesn’t settle anything and it doesn’t cause happiness. There are numerous times I’ve been so upset at what has happened, yet I don’t stay there, ns don’t live in that.