CFFC Facebook Posts – August 2019 – Part 2
08/16/2019 – Comment Period for Palliative Care Guidelines – Draft guidelines from the Cystic Fibrosis Foundation call for the incorporation of palliative care in the CF treatment plan from diagnosis throughout the life cycle. We encourage you to review the guidelines and provide your feedback before the close of the comment period on August 30th.
08/17/2019 – Lungs Grown in Yale Lab Have Potential for Patients with CF, Other Chronic Lung Diseases – Researchers are working on a solution to the shortage of donor lungs for transplantation.
08/18/2019 – Ask a Case Manager: What Should I Consider When Going to College? – Some timely advice for planning the move (or return) to college.
08/19/2019 – Losing Control: A CF Patient’s Journey Through Mental Health – The main thrust of this blog is to dispel the stigma of seeking mental health care. The story also touches on the topics of coordination among care teams, seeking multiple opinions and the impact of insurance.
08/20/2019 – Can a person catch cystic fibrosis from someone else? – Have you ever been asked if CF is contagious? (Bet you have!) This article doesn’t present any new information, but it can be a good reference for acquainting family and friends with key facts about CF.
08/21/2019 – Adapting the Routine – Here’s another look at adjusting routines for the return to (or start of) school.
08/22/2019 – When Will I Be ‘Sick Enough’ for a Transplant? – While the title of this blog may suggest a discussion of medical criteria, it presents the mental exercise of one person weighing the pros and cons of seeking transplantation.
08/23/2019 – In cystic fibrosis, lungs feed deadly bacteria – It turns out that a byproduct of the CFTR mutation produces a food source for Pseudomonas aeruginosa . This discovery could lead to new treatments to fight this bacterium.
08/24/2019 – Back-To-School Season: Resources – In this season of back-to-school sales to get necessary supplies for your children, CF Canada has provided resources to deal with the challenges of CF at school. While there are a few statements that are specific to Canada, these resources show that there are no geographic boundaries to CF support.
08/25/2019 – Back To School Season: A CF Mother’s perspective – As a follow up to yesterday’s post, a Canadian mom offers some back-to-school tips in this blog entry.
08/26/2019 – 5 Ways We’re Finding Our “Normal” – Since there is no universal “normal,” finding a “normal” in a CF family does not require comparisons to other families.
08/27/2019 – What to know about cystic fibrosis in children – This resource provides no new information for those familiar with CF; however, it provides a comprehensive discussion in easy to understand terms which make it useful for sharing with family and friends to acquaint them with CF basics.
08/28/2019 – Trained Sniffer Dogs Can Detect Key CF Bacteria, Study Shows – Would you rather be sniffed by a dog or swabbed for a sputum culture?
08/29/2019 – What I Learned Preparing for a Lung Transplant – Each CF experience is unique and that applies equally to transplantation; however, there is valuable insight in this story.
08/30/2019 – Can We Talk About CF Pain? – The primary attention in CF treatment is (rightfully) to the lungs and digestion but other CF-related issues also need attention. As the article suggests, the process starts by making your care team aware of all your concerns.
08/31/2019 – Headline About Vertex Drug is Causing a Panic Without Context, I Think We’re Going to Be Okay – The underlying messages in this blog post by Gunnar Esiaison are: (a) learn more about the issue before reacting to a disturbing headline, and (b) discuss any concerns you may have with your care team.