Breathing easier: Young Maritimer benefits from increased cystic fibrosis research
Published Tuesday, May 16, 2017 3:07PM ADT
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. While there is no cure, advances have been made to increase the life expectancy for those living with it.
A young Maritimer is one of the patients benefiting fromthe new research.
Grade 5 student Carys Nurseenjoys typical hobbies for an 11 year old, like playing basketball, or kicking the soccer ball with her dog.
"I love drawing and I like playing with my friends and hanging out."
Carys' day is also filled with activities that aren’t as typical.
"Whenever I’m getting up in the morning I have to do my mask and I do my pep. At the end of the day, after supper, I do my mask and I do my physio, where my parents pat me on the back or my side."
Carys was diagnosed with cystic fibrosis when she was 16 months old. The genetic disease affects the lungs and pancreas, causing the production of thick mucus and a lack of enzymes to digest food.
"I take vitamin E, vitamin D, my blue pill, and then my normal regular pills for my food."
The blue pill Carystakes is called Kalydeco, and is used to treat a certain type of cystic fibrosis mutation.
"Since she's been on Kalydeco she's been basically a normal kid. She's as active and as healthy as anybody else that she plays with, and we're very lucky,” says Carys' father Paul Nurse.
Paulsays his daughter has seen the positive impact of initiatives like Cystic Fibrosis Awareness Month first-hand.
"She's benefiting from years of research that has helped bring about a drug that has allowed her to lead a normal life. It is more research like this that can help others."
The director of the cystic fibrosisclinic at the IWK Health Centre says while major strides have been made, there's always the need for more awareness and research.
"In 1960, children died by age six, and now the life expectancy is over 50 years of age in Canada,” says Dr. Dan Hughes. “No matter what we do with CF, CF is still a disease that can shorten your life, but with appropriate research, and specifically with very specific care for CF patients, we're hoping to extend the survival even further."
As part of Cystic Fibrosis Awareness Month, a Walk to Make Cystic Fibrosis History is taking place in various locations across the Maritimes on Sunday, May 28.