May is Cystic Fibrosis awareness month, and a Vanderhoof resident who has a child with Cystic Fibrosis has organized a fitness event to create more awareness around the genetic disease.
Terra-lynn Culberson, organizer of the Social Distancing Cystic Fibrosis Walk/Run told the Omineca Express that every May there is a Great Strides walk around the world to raise awareness, however, due to the virus pandemic, people won’t be able to gather.
“Cystic fibrosis (CF) means so much to me, and I and many others think if we can bring more awareness to this disease, the government and others will help save our CFers. So that is why I wanted to continue with a Social Distancing Walk. We can share our images and accomplishments but also remembering that there is still a fight for CFers,” Culberson said.
The event started on May 16 and will end on May 29. Participants could walk or run 3 km, 5km or 8km. Every participant is encouraged to share a photo on the Facebook Event Page.
Meanwhile, even as the world is recovering through the effects of COVID-19, and British Columbia specifially is moving towards fewer cases, Culberson said that for people who have Cystic Fibrosis, they will still continue to be quarantined due to the high risk involved.
“Unfortunately we do not know enough about the virus and the side effects it would leave in a CFer.”
Cystic Fibrosis, as explained by Culberson and verified by the Omineca Express, is a serious genetic condition that causes damage to the respiratory and digestive systems. This damage results from a build-up of thick, sticky mucus in the organs.
The most commonly affected organs include lungs, pancreas, liver, intestines and more.
Cystic Fibrosis affects the cells that produce sweat, mucus and digestive enzymes. Usually, these secreted fluids are thin and smooth and they lubricate various organs and tissues which prevents them from getting dry or infected.
“In people with cystic fibrosis, however, a faulty gene causes the fluids to become thick and sticky. Instead of acting as a lubricant, the fluids clog the ducts, tubes, and passageways in the body. This can lead to life-threatening problems, including infections, respiratory failure and malnutrition. It’s critical to get treatment for cystic fibrosis right away. Early diagnosis and treatment are critical for improving quality of life and lengthening the expected lifespan,” Culberson explained.
Currently there is no cure for the disease, however, Culberson said a drug called Trifecta was approved by the U.S. Food and Drug Administration in October 21, 2019.
“This is a life changing drug that has drastically changed the Cystic Fibrosis community,” Culberson said.
However, it a drug created in the U.S. and currently costs over USD $300,000 per year.
“Right now Cystic Fibrosis Canada and other organizations and groups like CF Get Loud Canada are trying to bring it here.”
“With this drug CFers have found that they could live a little more normal life, breathe easier and less hospitalizations,” Culberson added.