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Jul

CFFC Facebook Posts – June 2019 – Part 2

06/15/2019Navigating Disabilities Services and Transitioning to College – In a follow up to Gunnar’s prior blog, he offers recommendations on on of the first steps to take after arriving at college.

06/16/2019Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines – The CF Foundation sponsored a committee that produced guidelines to be used by CF centers in approaching referral for lung transplantation. Perhaps the most significant recommendation is that the care team should initiate transplant discussions even where the person with CF is not inclined to pursue that option to ensure that the final choice is fully informed. Many other meaningful recommendations were formulated by the committee. It is worth noting that representatives of the Rochester adult CF clinic and one member of our CF community participated in the process to produce the guidelines.

06/17/2019 – Mental Health Insights – Like CF awareness, attention to mental health cannot be limited to the month of May. This blog gives first-person insight to some of the issues. [ Apologies. CF Roundtable recently overhauled their web site and the link no longer works.]

06/18/2019Inhaled Imipenem/cilastatin an Alternative Treatment for Lung Infection in Children with CF, Case Reports Show – Sometimes it’s not the drug, but the way it’s delivered, that produces negative side effects.

06/20/2019Why I Decided Not to Get a Lung Transplant – Every case of CF is unique. That applies to each person’s decisions regarding her/his treatment plan. The key to every option, including transplantation, is careful consideration of the associated pros and cons.

06/21/2019SmartCareCF – what’s next? – Here’s a progress report on the effort to enhance remote health monitoring in the UK.

0622/2019Clinical trials: A patient’s perspective – Clinical trials are an essential component in the development of new treatments for CF. With two posts today, we will share different views on clinical trials from our northern neighbors. The first is a patient’s perspective.

0622/2019Clinical trials: A patient’s perspective – Clinical trials are an essential component in the development of new treatments for CF. With two posts today, we will share different views on clinical trials from our northern neighbors. The second is a parent’s perspective.

06/23/2019Garden snails may have secret weapons against aggressive bacteria – A bit of curiosity led to an interesting discovery that may improve treatments for resistant bacteria. [No, this will not return us to the Dark Ages practice of using leeches.]

06/24/2019Keeping Active When You Are Not Feeling Your Best – Exercise and diet are essential parts of an effective CF treatment plan. That doesn’t change when you are feeling poorly.

06/26/2019 – For those who were unable to attend CFFC Education Day (and attendees who want to revisit), here’s the keynote by Jerry Cahill.

06/27/2019Long Use of Inhaled Antibiotics to Treat P. aeruginosa in Children May Raise Risk of Fungal Infection – Further proof that CF treatments are a delicate balancing act.

06/28/2019 – Coverage Tips for Costly Drugs (and other musings on paying for medications with CF) – Part 1, Private Insurance – The first of a three part series to educate and stimulate thinking about how best to pay for your health care.

06/29/2019Three new research centres to investigate fungal infections, Pseudomonas and lung clearance – UK’s Cystic Fibrosis Trust has announced the formation of Strategic Research Centres for three aspects of CF treatments.

06/30/2019From Boom to Bust: Managing Work with CF – Some observations on the cycles of CF at work.


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