Lauren Paulsen, a B.C. woman, says she is facing starvation in slow motion, and the province is not helping.
She has a rare disease that, coupled with a broken jaw she suffered during a dental procedure, has left her unable to eat almost anything, and the specialized formula she needs has been denied.
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Paulsen, who lives in Pitt Meadows, has not been able to eat solid food for months.
Her diet was already severely limited by a rare blood disorder called Hypereosinophilic Syndrome, which basically means her white blood cells are supercharged but they can’t distinguish friend from foe.
“They attack everything, and so if I eat the ‘wrong’ thing, they attack it; if I smell the wrong thing, they attack it,” Paulsen told CityNews.
The result is a severe allergic reaction to even the slightest trigger.
“There are more foods that she can’t have than she can; there’s hardly anything she can,” Sandra Paulsen said, Lauren’s mother.
She says that doctors have been petitioning the province on their behalf to help provide a specialized liquid formula that would meet her nutritional and allergenic needs, but those requests have fallen on deaf ears.
It’s meant they have been forced to buy and blindly test formulas, which has had brutal results.
“When you have a broken jaw, vomiting can cause drowning,” Sandra Paulsen said.
“The one I bought for Lauren made her severely ill, and I can’t take that risk again because the next time she could drown, because she can’t open her jaw much.”
They make their own shakes at home, but it’s not enough. Lauren is losing weight, and blood tests show she’s becoming increasingly anemic and vitamin deficient.
Just walking around the house exhausts her now.
Her mom says she is exhausted too, but by the constant struggle of advocating for access to life-saving measures, writing letters to officials that only get ignored.
“Watching a person lying in bed, completely unable to breathe, and wondering if they were going to be alive 30 minutes from when you saw them, is so excruciatingly difficult. I mean, these are the things I write to them: what she goes through, what no human being should go through,” Sandra Paulsen said.
The formula is just the latest difficulty.
The family spent years fighting to get a prescription for Dupixent, which they say is the main medication that can keep her disease in check.
They ended up getting it through a private insurer, but by then Lauren says the damage was already done.
“My body actually went through a lot of deterioration, so it’s not ever going to be functional,” she said.
In a statement to CityNews, the Ministry of Health said, “Every person in B.C. deserves high-quality health care, but it can’t comment on individual cases due to patient privacy and confidentiality requirements.”
“It felt like it didn’t; my life didn’t really matter to most people,” Lauren Paulsen said.
As she continues to lose weight, her family hopes they can find a solution before they lose her entirely.
