History
1960s In the beginning...
Due to a lack of information about cystic fibrosis, children born with CF in the 1950’s and 1960’s were often misdiagnosed with pneumonia, chronic bronchitis and whooping cough. This lack of information made it very difficult for physicians to diagnose the disease properly and for parents to understand the diagnosis. At that time, children with CF often died of malnutrition.In the early 1960’s, the life expectancy of a child with CF was only four years. Parents were told that their infants probably would not survive long enough to start school. This "life sentence" was a devastating blow to all parents.
CF parents refused to accept this automatic death sentence for their children. In 1960 they joined together to create the Canadian Cystic Fibrosis Foundation and asked Canadians to join with them in raising the funds needed to begin searching for a cure to this devastating disease.
1970s Changing Concerns
The challenges encountered in the 1970s revolved around the increased life expectancy of CF patients. Although such successes were celebrated, new challenges, such as how and where to treat CF adults, surfaced.By the 1970’s children with CF were living long enough to become teenagers and young adults. The median age of survival was the early 20s. Median age means that 50% of the population is younger and 50% is older. Improved survival could be attributed partly to wider medical awareness, earlier diagnosis, and improved treatment methods. The introduction of socialized medicine in 1968 also contributed to increased life expectancy as it meant that the cost for specialized services and treatment was not as much of a concern to families, as it was previously.
In the 1970s, pioneering doctors in Canada advised their patients to eat a high-fat, high-calorie diet, and to take digestive enzymes to help their bodies absorb nutrients from the food they ate. This diet revolution helped people with CF lead longer and healthier lives.
1980s A Breakthrough Decade
As the survival of young persons with CF continued to improve, the challenges as to how and where to treat older CF patients carried over from the 1970s into the 1980s. CF clinics were seeing older patients who were still being treated at children’s hospitals. Doctors’ attitudes also needed to be changed as CF patients became adults. Mr. Huth, whose wife, Susan McKellar, was one of the first Canadians with CF to have a baby, said his wife’s mission was to make doctors understand that there could be adult-directed care for the disease’s survivors.From a treatment perspective, new challenges appeared as CF patients began to live longer. Liver disease, almost unheard of in CF only ten years earlier, was now recognized as a problem. Furthermore, in older patients, the presence of the potentially deadly bacteria, appeared with increasing frequency.
Through the 1908s, the median age of survival increased from the mid-20s to the early 30s. Canadians with CF lived longer than their counterparts anywhere in the world, a testimony to the success of Canadian CF research and treatment programmes.
In 1989, Dr. Lap-Chee Tsui and his team from the Hospital for Sick Children in Toronto made medical history by discovering the gene responsible for CF. Dr. Tsui’s discovery was heralded around the world as one of the most important breakthroughs in medical history.
1990s The Work Continues
In the 1990s, as provincial governments sough to reduce or eliminate their operating deficits, families and adults with cystic fibrosis were being called upon increasingly to defend and safeguard the needs and interests of the CF community with respect to appropriate health care, government disability programmes, and public support for life-sustaining drugs and medications.Through the 1990s, the median age of survival remained stable in the early 30s. By 1997, 41% of the CF population were adults. Life expectancy in 1997 was 32 years, eight times what it was in 1960s!
