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Relatives planning to have children and going through genetic testing for CF will be able to find one another, as well as parents of children struggling with the illness.“This is a quality of life initiative,” says Adamson.
Fifty years ago, children diagnosed with CF weren’t expected to survive beyond kindergarten. While research into causes and treatments continues, initiatives to support the social aspect of living with the chronic illness are also important.
(1 in 29 Caucasian Americans carry the gene, but a person has to inherit it from both parents to develop the disease.) It causes the body to generate extremely thick mucus which accumulates in the lungs and pancreas, causing respiratory and digestive problems.
Symptoms include lung infections, chronic coughing, wheezing, poor growth, and weight gain.
And chronic infection leads to lung damage which can shorten a CF patient's life span.
Cystic fibrosis patients’ lungs become colonized with bacteria as time goes by, and once those bacteria get in there, it's almost impossible to eradicate them. cepacia, a virulent organism that can contribute to deadly infections, as well as other serious and antibiotic-resistant bacteria.
Mutual support is important because it is difficult for those who don’t have the disease to understand, she says.
The network will allow patients to share information about therapies, recipes and research in a Canadian context.
As a result, Stagg didn’t meet others facing the same obstacles until she was about 20.“With the current infection control protocols, people with CF are forbidden from hanging out with one another, it’s very much frowned upon,” she says.
“That can be very isolating and the last thing you want is for those with a chronic disease to feel all alone.”The My Cystic Fibrosis Canada Network is already going strong.