Al­ler­gic to ev­ery­thing

> Jo­hanna Watkins has a rare con­di­tion that puts her at risk on con­tact with most things, in­clud­ing her own hus­band

The Sun (Malaysia) - - FEATURE -

JO­HANNA WATKINS, 29, has lived in her bed­room for a year. As she’s al­ler­gic to dust, food and chem­i­cals among many other things, her hus­band Scott built her a ‘safe zone’ in their home in Min­nesota, the United States, where the win­dows are sealed, there’s no sun­light, and the room is wrapped in plas­tic.

What’s more, Jo­hanna is also al­ler­gic to most hu­man scents, in­clud­ing that of her hus­band.

Scott can’t hug his wife with­out hurt­ing her, so lives in a dif­fer­ent room down­stairs.

Jo­hanna suf­fers from mast cell ac­ti­va­tion syn­drome (MCAS), and was fi­nally cor­rectly di­ag­nosed af­ter over 30 doc­tors failed to work out what the prob­lem was.

Mast cells are a type of white blood cell which se­crete chem­i­cals into our bod­ies, con­trol­ling our im­mune sys­tem.

But Jo­hanna’s mast cells don’t work as they should – they re­lease chem­i­cals at the wrong times and in the wrong places, wreak­ing havoc to her sys­tem.

The first case of MCAS was di­ag­nosed just nine years ago, so rel­a­tively lit­tle is known about the con­di­tion.

How­ever, it’s es­ti­mated that 1% to 15% of the pop­u­la­tion may be suf­fer­ing from it.

For most peo­ple with MCAS, how­ever, it’s quite mild and eas­ily treat­able. Jo­hanna’s case, on the other hand, is so ex­treme she is yet to re­spond to any treat­ment.

All alone in her room, Jo­hanna at least has tech­nol­ogy to keep her from get­ting too lonely.

She spends her days chat­ting on the phone, over email and read­ing.

The only time Jo­hanna leaves her bed­room is to visit the doc­tor, but when she does, it’s in­cred­i­bly painful.

“As soon as that door opens, I can feel it,” Jo­hanna told the lo­cal Fox 9 tele­vi­sion sta­tion.

“My body goes into com­plete at­tack mode. 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.”

(left and right) Jo­hanna with hus­band Scott … try­ing to live with MCAS. (be­low) The cou­ple in hap­pier times.

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