Allergic disorder isolates woman

ROCHESTER – Johanna Watkins had hoped to be raising a family by now. Instead, the 29-year-old is battling a life-threatening disorder that's forced her into isolation.

Johanna hasn't seen her parents, Gail and Jon Fuenning, in more than a year. Her husband's mere presence in the same room has caused anaphylaxis — an acute allergic reaction that can be fatal — since April.

Tears flow freely and words often fail when her husband, a onetime colleague at Hope Academy in Minneapolis, contemplates the heartbreaking separation caused by mast cell activation syndrome, a rare disorder named less than a decade ago.

"There have been so many times in the last eight months where we have reflected on all that we have lost," said Scott Watkins, who married Johanna in 2013. "If we lived in that, it'd be constantly discouraging and there'd be no hope. We chose to live day to day. I may not be able to see Johanna for a month or another year, but for now, I just can't see her today."

The symptoms are startling: migraines that leave welts, food allergies that cause a distended stomach and pregnancy-like stretch marks, nonfunctioning bowels, life-threatening sensitivity to sunlight, odors and almost all foods. She's even allergic to common pill casings and pain relief medication, which makes surgery basically impossible.

Johanna now weighs just 90 pounds and can tolerate just one meal per day, which Scott spends hours preparing as a continuing sign of his affection. Chuck roast and cucumber lamb have been her only meals for the past year.

"I still have good days and bad days, so there's been physical pain as well as emotional pain," Johanna said via cellphone. "Everybody needs people. We weren't meant to be alone. Losing my husband was an especially painful loss. We're hoping it isn't forever."

Johanna doesn't leave that cocoon of relative safety unless it's to visit Dr. Lawrence Afrin at the University of Minnesota Medical Center. It took years of frustration and hundreds of hospital visits, including at Mayo Clinic, before she was diagnosed by Afrin in 2015.

The initial relief of identifying her ailment has faded after dozens of medical trials have failed to stabilize her condition.

"As a dad, you want to be able to fix it," said Jon Fuenning, who works in Mayo Clinic's IT department. "I can't fix this."

After sharing their story on CaringBridge, Scott and Johanna were invited to live with the parents of a Hope Academy student whose home is less than a mile from Afrin's care. That solution has lasted about a year without complaint from the homeowners, Dan and Lucy Olson, who can no longer cook in their own home due to Johanna's increasingly sensitive condition.

A potential long-term fix has emerged, thanks to the generosity of friends, family and strangers. A GoFundMe web page raised $35,000 in the first week and now sits at nearly $120,000.