'We have hope now. Before, we had no hope with no diagnosis': NICU nurse needs $100K for debilitating condition
VANCOUVER -- The first few years of marriage are supposed to be the honeymoon years, but for a Surrey, B.C., couple, they've been their biggest test yet.
At work on the front lines as a Delta firefighter, Damon Loewen knows his duty to the community, and at home, he knows his duty to his wife.
"To love and serve your wife, "said Damon summarized.
The two got married two years ago but it's been far from wedded bliss.
"The hardest part as a husband has been watching your wife, the woman you fell in love with, so full of life, slowly deteriorate," he said.
Melissa, a NICU nurse has always had health issues.
"It feels like I'm allergic to everything. We always joked that I should be living in a bubble or something," said Melissa.
But over the last year-and-a-half her symptoms, which vary, have only been getting worse.
"It feels like pain in my bones almost right down to the core, and yeah, just feeling really stiff and swollen. And then of course randomly I could have an allergic reaction. My throat would swell up," said Melissa.
She can no longer work and eating is problematic. Right now she says the only foods she doesn't throw up are frozen peaches and red meat.
"It changes all the time but this is what I am eating right now," said Melissa.
It's been years of failed treatments and no answers.
"I just want to be back to Melissa again and I feel like the fatigue and the pain it just keeps me from being who I am and who I can be," said Melissa.
Finally, they see a light at the end of the tunnel with a diagnosis.
"It's been like a huge relief to get a diagnosis of mast cell activation syndrome (MCAS) and at least feel like I'm not crazy," said Melissa,
"We have hope now. Before, we had no hope with no diagnosis. No doctor knew what was wrong," said Damon.
MCAS is a complex multi-system inflammatory condition.
Expert Dr. Tania Dempsey says it's not that uncommon.
"I suspect that there are lots of people walking around with this that don't know they have it they may have mild allergies they may have just mild inflammation they may have signs of it but they aren't bothered by it," Dempsey said.
But the severity of the disease varies.
"At the other end of the spectrum you have the people that are severely debilitated by it," she said.
Treatment also varies from case to case.
"All one has to try and do is identify the major triggers remove them and then re-establish mast cell stabilization," said Dr. Bruce Hoffman, a specialist in MCAS at the Hoffman Institute.
Dr. Hoffman says figuring out all the triggers can be difficult and requires specialized testing.
"Standard lab tests have absolutely no ability to look upstream to look for triggers of this disease," said Hoffman.
That is where it gets pricey.
"Lab testing is all U.S. based, Germany based. and it can be quite expensive," said Hoffman.
After numerous other treatments for MCAS failed, the Loewens decided to make an appointment with Hoffman in Calgary. For testing and treatment, they were quoted $100,000.
"We are desperate to get her life back," said Damon.
"If we have to sell our house, we will just do it," said Melissa.
So to help a friend started an online fundraiser.
"If we don't need all of the money and she has her health back, we already said we want to donate that to mast cell activation syndrome research," said Damon.