CFFC Facebook Posts – October 2020 – Part 1
10/01/2020 – What Are Your Remaining Medical Needs Post-Trikafta? – Gunnar Esiason gives us reality check in the euphoria associated with the success of CFTR modulators. And he is asking for some information to help him describe the post-Trikafta CF world.
10/02/2020 – Oral antibiotics torpedo Pseudomonas as effectively as IVs – The study cited in this article dealt with the initial Pseudomonas infection.
10/03/2020 – Potential Gene Therapy, SPIRO-2101, Named Rare Pediatric and Orphan Disease by FDA – Further evidence that researchers are not abandoning those in the CF community who cannot benefit from CFTR modulators.
10/04/2020 – Raising an Adult (in Training) – Learning to manage your own care starts at an early age.
10/05/2020 – Study: Screening for Hearing Loss in CF Patients Feasible With Tablet-based Tests – Hearing loss can be a side effect of antibiotic treatments. This study suggests a path to earlier detection.
10/06/2020 – Disability is a Reinvestment, Not a Defeat – The power of a word; the unfortunate power of a misunderstood word. This blog may help you combat misplaced ableism.
10/07/2020 – Drink coffee after breakfast, not before, for better metabolic control – CF-related diabetes is a significant issue in the CF community. This study indicates that those with CFRD may want to consider the timing of your morning coffee.
10/08/2020– Research in focus: Antimicrobial resistance in cystic fibrosis – The report linked in this article describes the efforts funded by Cystic Fibrosis Trust (the UK equivalent of Cystic Fibrosis Foundation) to overcome resistant infections.
10/10/2020 – How Do You Decide What Is Worth the Risk of COVID-19? – This blogger shares her approach to re-entering the world in the era of COVID. She even included a decision tree.
10/11/2020 – Lenabasum Fails to Lessen Exacerbations in CF Patients in Phase 2 Trial – It is important to understand that not all potential treatment are successful.
10/12/2020 – Despite the Detours, I Live a Full Life With CF – A young woman with a nonsense mutation, which makes her ineligible for Trikafta, still has a positive outlook on life.
10/13/2020– Remote control of blood sugar: Electromagnetic fields treat diabetes in animal models – Mice have been important “helpers” in many discoveries of CF treatments. Perhaps the correction of diabetes in mice will lead to simpler control of CFRD.
10/14/2020 – What a glow can reveal: women in research investigate the CF protein – UK’s Cystic Fibrosis Trust honors Ada Lovelace Day (to celebrate the achievements of women in science) with a story of three women seeking to discover the inner workings of the CFTR protein.
10/15/2020 – Hitting the Reset Button on My Life Because of Trikafta – Can you ever have too many stories about how Trikafta turned a life around?