Cystic fibrosis is known as a devastating disease that causes severe respiratory problems and interferes with digestion because of thick mucous in the lungs.

But there’s something else patients with the fatal genetic condition face — social isolation, especially from each other. They can’t meet fellow patients in person because of certain bacteria they carry, which can lead to serious infection.

As of this week, the roughly 4,000 CF patients across the country, their families and friends have a new way to connect. A social network launched by the non-profit Cystic Fibrosis Canada will help them find one another and converse via video-chat, instant message or online forums.

“It’s the kind of thing the community really needs,” says Carly Stagg, 31, of Calgary, a CF patient who was actively involved in planning and designing the new portal.

Stagg was diagnosed at the age of 14, much later than most cases, which are identified in the first few years of life. It was around the time medical authorities discovered that gatherings of CF patients put them at risk, bringing an end to summer camps for children with the disease and other group activities.

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. It’s an open platform that’s easy to join and use and is expected to attract not just CF patients, but also parents, siblings, spouses and friends.

CF patients face onerous therapies, the equivalent of four months of full-time work each year, says Maureen Adamson, president and CEO of Cystic Fibrosis Canada.

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.

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.

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Fifty years ago, children diagnosed with CF weren’t expected to survive beyond kindergarten. Today, the average age of survival is 48.5. While research into causes and treatments continues, initiatives to support the social aspect of living with the chronic illness are also important.

The network was fully funded by Novartis Pharmaceuticals Canada Inc. and cost roughly $100,000 to develop.