On May 26, thousands of participants across Canada will come together at local community walk sites during Cystic Fibrosis Awareness Month.
It’s a walk to make Cystic Fibrosis history – the most common fatal genetic disease that affects young Canadians.
“I spent my first thirteen days of my life in the NICU at SickKids,” said Lauren Anderson, patient advocate for Cystic Fibrosis Canada. “I was diagnosed within that time that time with Cystic Fibrosis and I’ve been living my life with it for the last seventeen years.”
The genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys and intestine has not slowed Anderson down.
“I’m a perfectly normal teenager. The definition of “normal” of course,” said Anderson. “Although I go to school and I work hard and I play soccer, I have a bunch of time with my friends, but I have to do a bunch of extra stuff to keep healthy.”
The extra “stuff” Anderson talks about is doing physiotherapy twice a day, taking more than 35 pills daily just to digest her food. Anderson is also on a trial drug.
“There’s no cure for any type of CF as of right now,” said Anderson. “So this amazing drug called Orkambi I’ve been on since 2014. It has helped me with my lung function, keeps my health as high as it could be, and with that, it still has not been approved by Health Canada.
“I try to raise as much awareness in how effective this drug is in order to help all the other patients who have the exact same type of Cystic Fibrosis as me. Two mutations created my type of CF, so it came from my mom and my dad.”
Anderson is in her last year of high school and is very active as the president of the athletic council. Next year she heads off to university with a goal of becoming a teacher, but still finds time to lend her voice on behalf of Cystic Fibrosis Canada and because of it, last year received the Future Leader award.
“All kids have dreams and my dream is definitely simple,” said Anderson. I dream of a future where CF no longer stand for Cystic Fibrosis, but rather stands for cure found.”