With advancements in CF treatments, including new modulator therapies like Trikafta, patients living with CF are living longer. Longer life expectancy may raise new challenges that could include feeling unprepared for the future, issues around family planning and aging with CF. Your team is listening and is looking at ways to provide more support for your mental health. Both anxiety and depression are common amongst the general public however, we know that living with a chronic illness like CF can also increase the likelihood that individuals will experience a greater degree of anxiety and depression. For patients living with CF [...]
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CF Research Update In the early 1960s, CF Clinics were created to provide specialized care for people with CF. Some of the initial therapies are still in existence today (such as chest physio for airway clearance) and some have been proven ineffective (such as mist tents) and discontinued. But over the past 60 years, treatments have mostly been additive – meaning we rarely took away treatments, only added on more and more things for people with CF to do as part of their daily health routine. Although this helped improve survival, it also increased the burden of care for people with CF. [...]
Sleep Outcomes and Mood in Adolescence and Young Adults with Cystic Fibrosis Some research suggests that young people with cystic fibrosis (CF) may have more trouble with sleep than people of the same age without chronic illness. Poor quality sleep can affect a person’s ability to concentrate at school/work and feel well emotionally. This study will measure the sleep and mental health of adolescents and young adults (aged 14-25yrs.) with CF and compare this to adolescents and young adults without chronic illness. This study will: Investigate whether those with CF have more sleep difficulties and more mental health concerns than [...]
Historically, people with CF have been advised to follow a high fat, high calorie diet with limited guidance around nutrient density and the quality of foods. This was because malnutrition was a common feature of CF and was directly linked to lower lung function and poorer survival. But times are changing. People with CF are living longer, healthier lives and some people are noticing changes in their weight after starting modulator therapies such as Trikafta. Eating more than you need has been linked to new health concerns in CF such as obesity, insulin resistance and other hormonal disturbances. It may also [...]
Airway clearance and improving strength, endurance and physical fitness has always been essential for optimizing lung function in Cystic Fibrosis (CF). People with CF are encouraged to adopt an airway clearance routine early on, from initial diagnosis. This is paralleled with maintaining a physically active lifestyle to improve overall health and quality of life. Recent research validates previous findings that no one particular form of airway clearance (AC) is superior to another. As such, people with CF are encouraged to use airway clearance techniques (ACTs) that best fit with their preferences, finances, and lifestyle. People with CF often wonder if aerobic [...]
The North American CF Conference is the largest annual assembly of doctors, researchers, allied health professionals and many others dedicated to the treatment of Cystic Fibrosis. The 2022 edition of the conference was held in Philadelphia last October. As always, your St. Michael’s team was well represented at the conference. NACFC 2022 - Anne Stephenson Dr. Anne Stephenson presented her poster at NACFC about survival and health outcomes following liver transplantation in CF. Data from both Canadian and US registries were used. The study cohort included 407 liver transplant recipients between 1987 and 2019. Most transplant recipients were children. Median [...]