CFFC Facebook Posts – December 2022 – Part 2
11/16/2022 – Taking 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.
11/17/2022 – Shining 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.
11/18/2022 – New test can help patients with cystic fibrosis – A simple non-invasive test can supplement clinical assessment to evaluate the progress of CF treatments.
11/19/2022 – How 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.
11/20/2022 – Macauley’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.
11/21/2022 – Research 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.
11/22/2022 – Why 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.
11/23/2022 – NACFC 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.
11/25/2022 – Blood 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.
11/27/2022 – Giving Myself Grace – An important message is repeated throughout this blog: different is okay; do what’s right for you.
11/28/2022 – Put 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.
11/29/2022 – My 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.