A Quesnel woman is speaking out about the challenges of accessing treatment for her rare medical conditions, eosinophilic esophagitis (EoE) and eosinophilic gastritis (EoG).
“I’m in constant pain, and even eating is a challenge,” said Danielle Caron, who received her diagnosis after biopsies in September 2023.
“There are days I can’t eat at all because the pain is too severe, and simple foods that most people take for granted can trigger extreme reactions.”
Eosinophilic esophagitis is a chronic inflammatory condition of the esophagus caused by a bildup of eosinophils, a type of white blood cell. As for eosinophilic gastritis, it’s a chronic inflammatory condition where the same type of white blood cells infiltrate the stomach lining.
According to Food Allergy Canada, the condition is triggered by a variety of genetic, immune and external factors and may develop as a delayed allergic response to certain foods.
Some of the symptoms include difficulty swallowing, food sticking, chest pain, heartburn, poor weight gain and vomiting.
Also, according to Food Allergy Canada, if the condition is left untreated, the inflammation in the esophagus can, in some cases, cause narrowing from scar tissue to the point where it becomes more and more difficult to swallow food.
Caron explained that navigating the healthcare system has been a frustrating and exhausting process.
“I’ve had to contact multiple specialists and programs, and sometimes I’m told I don’t qualify for the treatment I need,” she said. “It feels like I’m constantly hitting roadblocks.”
She has even explored options in other provinces but has run into additional barriers.
“There are so many eligibility requirements I can’t meet. Knowing there are treatments available elsewhere that could help me, but not being able to access them, is incredibly discouraging,” Caron said.
To manage her condition in the meantime, Caron has relied heavily on community support.
“Friends and family have been amazing, helping me get through the toughest days,” she said. “But the costs of medications, specialist visits, and other treatments not covered by public healthcare add up quickly.”
Caron has launched a GoFundMe campaign to help cover these costs and raise awareness about her conditions.
“Any support, whether it’s donations or even just sharing my story, makes a huge difference,” she said. “These are rare diseases, and there isn’t much public understanding or awareness. Every little bit of support helps me access the care I desperately need.”
Caron hopes sharing her story will shed light on the challenges patients with rare conditions face in the healthcare system.
“It’s exhausting to live with something rare and serious, but not being able to get the treatment you need makes it even harder,” she said.