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Aug

CFFC Facebook Posts – August 2020 – Part 1

08/01/2020With School Reopening, How Do I Know I Can Trust My Classmates? – Gunnar Esiason shares his thoughts on the prospects of returning to school (including an extrapolation to elementary and high school). It’s likely that his thoughts are close to yours.

08/02/2020‘Drawn-on-skin’ electronics offer breakthrough in wearable monitors – Another research report that is not directly related to CF; however, the advances in remote collection of health data is has great potential for individuals who live far from their care providers or need to avoid contact with other patients.

08/03/2020The Grief of Living With CF Needs to Be Felt – This blogger explains how her career in social work brought deeper understanding of the role isolation plays in CF mental health.

08/04/2020Thread-based Wearable Device May Help Diagnose, Monitor CF and Other Conditions – This research points to another option for non-invasive collection of health data (see August 2nd post), This one is more directly associated with CF.

08/05/2020Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience – Cystic Fibrosis Foundation has received recognition for its approach to community inclusion in the development of care guidelines.

08/06/2020Access to medicines starts with clinical trials – This article from UK’s Cystic Fibrosis Trust provides a good overview of the progression of CFTR modulator approvals, including a pitch for participation in clinical trials.

08/07/2020Choosing My Health Over My Livelihood – The pandemic creates a lot of tough choices.

08/09/2020Diagnosis Privilege Can Be a Form of Discrimination – A reminder of how lucky some of us are even as we battle the challenges of CF.

08/10/2020One Month to 2020 Living with CF Golf Tournament – It’s getting close. Time to sign up!

08/11/2020Nutrition leaflets – Cystic Fibrosis Trust (UK’s CF Foundation) produced a series of 20 leaflets that provide information on a wide array of gastrointestinal issues ranging from “nutrition and pregnancy” to “post lung-transplant-nutrition.”

08/12/2020Mental Health During COVID-19 – The mental health concerns associated with CF can be amplified by the pressures added by COVID-19. This blogger offers some ideas for dealing with this double whammy.

08/13/2020Higher Prevalence of Oral Candida Fungus Found in CF Patients – The bad news: this fungus is more common in people with CF. The good news: it’s treatable.

08/14/2020Answering Questions on School Reopening and CF – You may find the panel discussion contained in this link useful as our local school districts finalize their plans for the fall. The article has a timing guide to help you find the portions of the discussion of most interest to you. [BTW: You may recognize one of the panelists.]

08/15/2020Opening Up About CF in a New Place – Gunnar Esiason relates his story of disclosing his CF at college. He also acknowledges that individuals will handle it differently. The advent of virtual leaning also puts a wrinkle in the formation of support networks.


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