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Feb

CFFC Facebook Posts – February 2018 – Part 1

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the first half of February 2018.

02/01/2018The Journey to My First “Lung-iversary” – This story will resonate with many in our local CF community as the author describes the anxiety of the wait for donor lungs, the challenge of the surgery and the freedoms experienced post-transplant.

02/02/20187 Unexpected Germ Risks for Cystic Fibrosis Patients – This article will make better informed – and maybe a little paranoid.

02/03/2018The Pros and Cons of Enrolling in a Clinical Trial – The news we get about research discoveries depends on individuals volunteering to participate in the studies. Gunnar relates his reasons for and against participation.

02/04/2018CF MiniCon: Self-Care and Relationships – CFF is offering another opportunity for the CF community to connect with their peers through a virtual conference. This event is open to family members as well as those living with CF.

02/05/2018When the Patient Is a Hostage – Hopefully, you have not – and will not – encounter such a situation as extreme as the one described in the article; however, it is a strong reminder of the need to advocate for your care. After all, nobody knows you better than you do.

02/06/2018The Other Side of the Antibiotic Coin – This story, although more dramatic than many in the CF community, clearly describes the critical balancing act between the miracle of today’s drugs and their debilitating side effects.

02/07/2018Hypertonic Saline Prolongs Mucus Clearance in Adult CF Patients, Study Finds – You want to get the most of the time spent doing treatments. This study shows the extended benefit of hypertonic saline.

02/08/2018Using artificial intelligence to follow and predict cystic fibrosis symptoms – Cystic Fibrosis Trust serves the CF population in the United Kingdom in a way similar to how Cystic Fibrosis Foundation serves the US population. This article from last November describes two studies funded by Cystic Fibrosis Trust that seek to improve responsiveness to symptoms as they emerge.

02/09/2018Volatile Molecules from CF Patients May Help Identify Bacterial Infections, Researchers Find – This article presents a technique for improving the accuracy of bacterial diagnosis. While limited to Pseudomonas, faster and more accurate identification of exacerbations can make a big difference in treatment.

02/10/2018Participating in a Clinical Trial Is Empowering – Medical advances require participants in trials to evaluate the effectiveness and safety of new treatments. Check with your CF team to learn about trials being run in your area.

02/11/2018Another step in the journey: From CFTR mutation to sweat chloride concentration to survival – This article not only describes progress in the analysis of chloride concentrations to predict outcomes, but also demonstrates how researches use historical data as well as current collections.

02/12/2018Yes, Cystic Fibrosis, a Chronic Health Condition, is a Defining Characteristic – Gunnar tries to find middle ground between denying CF and letting CF control him.

02/13/2018Ion-Sugar Interaction in Airway Mucus Has Implications for CF, Studies Show – Basic science is at the root of finding new therapies.

02/14/2018FDA Approves Symdeko, Vertex’s Combo Therapy for Patients with Certain Mutations in CFTR Gene – This just in. Good news for those carrying two copies of the F508del mutation who are 12 or older.

02/15/2018What I Learned From Fostering 3 Kids – This story describes one alternative for those who cannot have their own children.

 


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