Keyaan Vegdani, a 16-year-old from Burnaby, BC, has written about his diagnosis and personal experiences with Crohn’s disease in hopes of helping other children living with the chronic disease in Canada.
IN My Crohn’s bucket, as Vegdani also illustrated, he breaks down what the disease is and what it is like to have it.
“[I’m] to ensure that children who have just been diagnosed with Crohn’s disease do not go through too much pain, ”Vegdani said.
“They’re already going through physical pain, and I don’t want them to go through too much emotional pain.”
What inspired the book?
Vegdani was diagnosed with Crohn’s disease in February after months of uncertainty about his symptoms. Some days he could not get out of bed. He had also missed two weeks of school.
“It was a pretty scary time. We were trying to figure out what was going on. He was in all this pain. I sometimes felt helpless,” said his mother, Tasnim Vegdani.
Crohn’s is a lifelong chronic autoimmune disease that inflames the intestines. Signs and symptoms may include abdominal pain and cramps, severe diarrhea, rectal bleeding, blood in the stool, weight loss and loss of appetite.
“In the beginning, I was really like that … why is it me who has to go through this? What did I do to deserve this?” said the younger Vegdani.
But he says that when he came to his diagnosis, he realized that many others who have the same condition may be living in silence or were not aware of the disease.
“I thought ok, maybe I should change the narrative of what people expect Crohn’s disease patients to have,” Vegdani said.
In the book, Vegdani writes about the autoimmune disease in a simplified way. He says he uses the bucket as a metaphor to describe how everyone experiences Crohn’s differently.
“You can have a big bucket, squirming buckets and Crohn’s disease [like a bucket] is different for each person. “
Vegdani is one of more than 7,000 young people under the age of 18 living with Crohn’s or colitis, according to Crohn’s and Colitis Canada.
The organization says the number of children diagnosed with the condition has increased by more than 50 percent in the last 10 years, and that an estimated 300,000 Canadians live with Crohn’s or colitis.
Vegdani says he hopes opening up about his journey and writing the book will help support research and raise awareness about the disease he feels is unknown to many.
“[Others who have it] may feel isolated and alone. But I want them to feel like I’ve had it too. I’m with you, he said.
“You can read this book and feel that other people are in the same situation as you.”
All proceeds from Vegdani’s book sales will be donated to Crohn’s and Colitis Canada in late September.