Cystic Fibrosis Weekly Update

Contents:

West Virginia University Grad Student Assessing CF Teens’ Nutrition

Mar 18, 2020 08:00 am | Iqra Mumal MSc

Kristine Durkin, a West Virginia University graduate student, is carrying out a study to assess whether teenagers with cystic fibrosis (CF) are meeting their nutritional requirements, and identify ways to help them improve their diets. CF teenagers often struggle to maintain healthy weight. They usually receive two to three hours of medical treatments every day, and […]
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I Don’t Fit the Description of What CF Is ‘Supposed to Be’

Mar 17, 2020 03:00 pm | Bailey Vincent

“My gut is the source of most of my sickness.” I say this a lot. I say it to explain why I’m not what I’m “Supposed to Be” as someone with cystic fibrosis (CF). I say this to help others understand. I have lung disease, light scarring, and varying infections that have required IV antibiotics […]
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Canadians Lobby Government to Reassess Proposed Regulations Affecting Access to Trikafta

Mar 17, 2020 07:00 am | Iqra Mumal MSc

Canadian patient advocates and leaders in the field of cystic fibrosis (CF) are meeting with Canadian government officials to lobby for changes to proposed regulatory reforms that are preventing CF patients from accessing Vertex’s new breakthrough therapy, Trikafta. Trikafta, Vertex’s most recent FDA-approved medication for the treatment of CF, is a triple combination composed of elexacaftor, tezacaftor, […]
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