You might have heard or seen people having or suffering from allergies related to cosmetics, food products and much more but here is a woman who has spent the last year in her bedroom, locked away from light, dust, and even her husband due to a rare form of an immunological disorder.It’s not unusual to joke about being “allergic to everything.” for she really is allergic to everything. Her husband Scott built her a “safe zone” where the windows are sealed, there’s no sunlight and the room is wrapped in plastic. 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.The first case of MCAS has diagnosed just nine years ago, so relatively little is known about the condition, All alone in her room, Johanna at least has the technology to keep her from getting too lonely - she spends her days chatting on the phone, over email and reading.
Johanna leaves her bedroom only to visit the doctor, but whenever she does, it’s incredibly painful.“As soon as that door opens, I can feel it. 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.”
Here are very few foods Johanna can eat: ground lamb, chuck roast (a type of beef), cucumbers and carrots. Every day, Scott spends hours preparing meals for Johanna, who’s been eating the same food for a year.
Johanna has not yet responded to any treatments for the condition.Treatments and medications typically prescribed to MCAS sufferers have been unsuccessful in her case. She's endured four rounds of chemotherapy with no success.
Despite the devastating setbacks, the couple remains hopeful that they will find a successful treatment and resume their lives together.
"We're absolutely committed to one another," Scott said, "and we're going to wait as long as it takes to see if there is some kind of healing."
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