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CFFC Facebook Posts – January 2020 – Part 2

01/16/2020Approaches Like Yoga, Along with Meds, Key to Managing CF Pain, Experts Say – Pain management is possibly under reported as a component of CF care. This article gives more insight into the issue.

01/17/2020Trikafta Up Close and Personal – More information on the Trikafta experience but this time with some local connections: former CFFC president Kori Tolbert Doherty and current director Anne Governor.

01/18/2020New Lung Clearance Index package to boost access to trials – The improvements in overall health in the CF community generates changes in the medical community. Including clinical trials. For example, UK’s Cystic Fibrosis Trust is investing in more precise lung function measurement.

01/19/2020Announcing Tune Up Tins – In case you missed the original announcement in the flurry of holiday activities.

01/20/2020Organ Care System Used at Florida Hospital Expected to Make More Lungs Suitable for Transplant – A system that extends the viability of organs fr transplant is not only good news for recipients, but it also gives donors the assurance that their gift will not be in vain.

01/21/2020That Time a Healthcare Provider Accused Me of Being a Drug User – While the story is scarily interesting (or interestingly scary) in its own right, there is an underlying message of advocacy, particularly having an advocacy buddy when you’re too sick to speak for yourself.

01/22/2019Basics of Lung Care – As indicated in the title, this is very basic information which “veterans” are likely to know; however, a refresher may be useful and it may help you explain the importance of lungs to your family and friends.

01/24/2020CF Foundation Awards $700K to Support Work into Treatments for B. cepacia Infections – We have shared several articles concerning treatments for Pseudomonas. The research announced in this article will seek similar advnces regarding Burkholderia cepacia complex which, although rarer, is particularly vicious.

01/25/2020Trikafta Shattered My Negative Attitude and Expectations – Another Trikafta story. Like Kori’s interview we shared on 1/17, this blogger notes the difference between the Orkambi and Trikafta experiences.

01/26/2020I Keep Forgetting CF Is Invisible – Some interesting thoughts on the invisibility of CF.

01/27/2020Cystic fibrosis carriers: What to know – After a diagnosis, it is natural to focus the attention on the person with CF; however, the parents may grapple with questions about carriers. This article may help answer those questions.

01/28/2020Proteostasis On Track to Develop Organoids for Personalized Medicine Strategy for CF Patients with Rare Mutations – The process discussed in this article is interesting on many levels: the pure science of producing “organoids,” reducing the need for individuals in the early stages of research, and (most significantly) the path to CFTR modulators for rare mutations.

01/29/2020Samuel Moreau: My Wish to Thrive In Spite of CF – It’s best to start building your motivation early in life. This Canadian teenage describes the source of his motivation.

01/31/2020Underweight CF Patients Have Lung Transplant Survival Rates Comparable to Recipients With Other Lung Conditions, Study Reports – One of the anxieties for those investigating lung transplantation is being healthy enough when a suitable donor is identified. This study should lessen the anxiety associated with weight.

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