University of Waterloo
A 17-year old boy who is allergic to peanuts, milk and shellfish drew this sketch of what he feels like when he joins his friends at a pizza lunch. "I feel sad when I can't share in lunch with my friends."
As they talked with youngsters with life-threatening allergies, researchers from the University of Waterloo encountered a repeated theme: Loneliness, social isolation, a persistent stigma.
"[The kids] say 'stay away from me,' I've touched peanuts," 10-year-old Mia said.
"In elementary school and high school, when they see the EpiPen pouch…they think to themselves 'there is something different about you," said Robert, a teen. "Automatically, you are tagged as a person who is different…you are on the outside."
It was a small study involving 20 young people. University of Waterloo public health and health systems professor Nancy Fenton and Susan Elliott, a professor in the applied health sciences department, interviewed 20 children aged 8-18 and found, from their stories, that an allergy can have huge social implications for young people.
University of Waterloo
A 16-year-old boy who is allergic to nuts and some shellfish says he spends most of his time at school in the music room, because food is not allowed in order to protect the instruments.
The study —which is part of a larger work slated for publication in 2013 — was done as an examination of life after Sabrina's Law, which requires staff at Ontario schools be trained on how to recognize and deal with anaphylaxis and have an action plan in place. The law took effect in January, 2006, nearly three years after 13-year-old Sabrina Shannon of Pembroke, Ont. died from eating French fries that were cross-contaminated with dairy.
"Despite the inclusionary policies in place at school through Sabrina's Law, all children and youth, through the interviews, talked about the barriers every day that made them feel excluded," Ms. Fenton said during her presentation on Wilfrid Laurier University campus Wednesday.
Sabrina Shannon certainly felt that isolation, her mother shared during the same presentation. She would get invited to birthday parties at first, but once her food allergy limitations became known, the invitations dried up, said Sara Shannon, who has become an outspoken advocate for anaphylaxis awareness.
"At school, Sabrina was instructed to sit alone, away from all of her classmates at a table, well removed from other students," she said. "Despite showing a brave front and a positive attitude, I believe that this exclusion at a tender age was very harmful and hard on her."
Through their interviews, Ms. Fenton found the isolation affected some students more than others.
"There were a couple participants who didn't eat at school and were anxious about the thoughts of going to university in unregulated environments," she said.
And does the social exclusion have an impact on their actual well-being?
"For these kids it had some effect," Ms. Fenton said. "There were also some kids in the study who were really resilient."
As part of their methodology, researchers had the students draw a picture of what it's like to live with a severe food allergy. One teen drew himself in the middle of a food fight —a life-and-death minefield for someone like him. Another drew himself sitting at a table with friends —the only one without a slice of pizza.
Ms. Fenton and her colleagues asked the participants whether things have gotten better post-Sabrina's Law, which also promotes education and awareness in schools. Many students and parents said it had —home was no longer the only safe place for young people with anaphylaxis. School communities began to take more responsibility and students became more aware and sensitive to the dangers as well, she said.
And because the study looked at both younger and older students, who experienced life before the law, there were different perspectives on its impact, she added.
"One of the distinctions between pre and post [law] and because we had that unique sample group, the kids who were younger said 'it's less of a deal,'" she said.
Sabrina's Law was the first of its kind when it was passed in Ontario, and the legislation has received interest from around the world, Sara Shannon said.
"There's a larger circle of responsibility for looking after children's safety at school now," Ms. Fenton said. But students still face these challenges out in the community while they're not in class.
"The results in our study show the events and travel to a restaurant outside of environments at home were still considered very isolating," Ms. Fenton said.
