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The study aims to collect a pancreatic enzyme replacement therapy (PERT)  capsules from a cross section of persons with CF living in all regions of Canada.  We intend to screen these capsules for Hepatitis E virus RNA.   Prior work from our group has identified a 4X increased risk of HEV seropositivity in persons with CF relative to the general population, 3 cases of chronic hepatitis E virus infection amongst those living with transplants, and HEV RNA in 43% of locally acquired PERT capsules (PMID: 38621922).  We have hypothesized that in very rare circumstances, PERT may be a source from which [...]

Travelling requires planning and preparation ahead of time. We’ve created a guide to help you along with this process! First of all, it is important to inform your CF care team if you are planning a trip so they can prepare a travel letter for you. This allows you to bring your medications and medical equipment onto the plane. All of this should be kept in your carry on. Your carry on should include your medications so they don’t get lost, and so you have access to them during your flight if you need it. Once your tickets are booked, [...]

Air quality plays a crucial role in the respiratory health and overall well-being of individuals, especially for those living with cystic fibrosis (CF). Air quality refers to the composition of the air in terms of pollutants and particulate matter. It is measured using the Air Quality Health Index (AQHI), a standardized scale that categorizes air quality levels based on concentrations of pollutants. The AQHI is presented on a scale of 1 to 10+ with 4 health risk categories: 1 to 3 = ‘low’ health risk; 4 to 6 = ‘moderate’ health risk; 7 to 10 = ‘high’ health risk; Above [...]

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 [...]

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. [...]

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 [...]