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Nov

CFFC Facebook Posts – December 2022 – Part 2

11/16/2022Taking the Reins of My Own Care – Going away to school is often the time when a person assumes responsibility for their health – and that is another part of the education experience.

11/17/2022Shining a light on those who can’t benefit from CFTR modulators – We have previously shared articles dealing with the differences in the CF experience for individuals from the non-Caucasian population. This study looked at the difference in eligibility for CFTR modulators.

11/18/2022New test can help patients with cystic fibrosis – A simple non-invasive test can supplement clinical assessment to evaluate the progress of CF treatments.

11/19/2022How Prolonged Prednisone Use Led to Diabetes for Me – We are all familiar with the negative side effects of the medications necessary in CF treatment. This is a story about learning to live with the trade-off.

11/20/2022Macauley’s story: “Being required to wear a hearing aid felt like the first visible part of having CF” – Hearing loss is another negative side effect of CF treatments. Positive attitude and adaptation were the keys for this blogger.

11/21/2022Research into novel ways to detect antibiotic-related hearing loss for people with CF – Yesterday, we shared a story about hearing loss resulting from use of common Cf antibiotics. This article describes the steps being taken inn the UK to simplify testing for hearing loss.

11/22/2022Why I Took My Daughter Off Trikafta – We know that Trikafta doesn’t work for all CF mutations. This story tells us that side effects may mean that Trikafta will not work for some individuals with eligible mutations.

11/23/2022NACFC videos are now available – This link to Youtube will connect you with recordings of all North American Cystic Fibrosis Conference 2022 sessions.

11/24/2022 – Happy Thanksgiving! With the advances of all treatments and the increased attention to mental health needs, there is plenty for which we can be thankful.

11/25/2022Blood Levels Low With CF for Two Hormones Tied to Fertility, Weight – Research is finding explanations for observed symptoms in CF which, in turn, can be translated into more effective treatments.

11/26/2022 – Under the microscope: Investigating new ways to treat Aspergillus fumigatus in people with CF – Aspergillus fumigatus is found everywhere in our environment so it is important to understand its effects and treatments.

11/27/2022Giving Myself Grace – An important message is repeated throughout this blog: different is okay; do what’s right for you.

11/28/2022Put the kettle on! How black tea (and other favorites) may help your health later in life – No this research is not directly related to CF, but we know that health care extends beyond CF. More good news – if you don’t like tea, red wine and dark chocolate also work.

11/29/2022My Return to In-person Events Was a Success – Media coverage of The COVID pandemic has dropped off significantly, yet the risk of airborne disease is always a concern for people living with CF. This is a heart-warming story that demonstrates that people can be considerate of the risks to others.

11/30/2022“Our hope is for Rufus to be ordinarily extraordinary” – For some, the CF challenges begin before birth. Fortunately, this couple found support at the time they needed it most.


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