CFFC Facebook Posts – February 2021 – Part 2
02/16/2021 – Getting started in a career in research – We missed this item on International Day of Women and Girls in Science but the topic is relevant every day. Although the story comes from the UK, the sentiments apply on this side of the pond.
02/17/2021 – Disaster and Emergency Preparedness Plan – Cystic Fibrosis Foundation offers guidance for generic natural disasters. The spate of severe weather make this relevant today.
02/18/2021 – Our Proposal Story! The One Year Anniversary of Our Engagement – The only connection to CF in this story is Gunnar Esiason, but who doesn’t need a good love story at this tine of year.
02/19/2021 – Bronchitol, Inhalation Powder for Mucus Clearance, Arriving in US – Help for lung clearance may be on the way for those who are unable to use Trikafta.
02/20/2021 – Not Letting CF Guilt Hurt My Relationship – Guilt is part of the mental health challenge faced by people living with CF.
02/21/2021 – Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients – How do your observations match up with these survey results? [Note: The article includes a link to the survey report.]
02/22/2021 – Trikafta Brought Me Twins – Another long-term benefit of CFTR modulator medications.
02/23/2021 – Research Examines CF Patients’ Susceptibility to COVID-19 – This article describes the premise of new research to examine COVID-19 in CF cells. Although no results are reported, the discussion of the research methodology is fascinating – and promising for future research.
02/24/2021 – My Experience With My Husband’s Lung Transplant – The emotional stress of caring for someone living with CF is amplified with transplantation.
02/25/2021 – Your Questions About My COVID-19 Vaccine Experience Answered – As usual, Gunnar Esiason translates his experience into generalized recommendations. Note: His experience was in New Hampshire so some of the details may vary in New York or whatever state you’re in. Two words, however, will apply universally: persistence and patience.
02/26/2021 – Changes in fecal microbiota with CFTR modulator therapy: A pilot study – The primary focus of CFTR modulator research has been the lungs. This link points to a pilot study that examined digestion and nutrition.
02/27/2021 – Talking to Our Son About His Baby Sister’s CF – As with so many things, raising a child with CF complicates the relationship with siblings.
02/28/2021 – Potential CF Mutation, F1099L, Identified in 2 Minority Children in US – This study produced three interesting points. One, the list of CFTR mutations continues to grow. Two, CF has no ethnic boundaries. Three, the severity and extent of symptoms is driven by the specific mutation.