CFFC Facebook Posts – May 2019 – Part 1
05/01/2019 – CF Awareness Lasts All Year – Yes, May is CF Awareness Month. The again, every day is CF awareness day.
05/02/2019 – CF-associated Bacteria and Fungi Affect Each Other’s Growth, According to In Vitro Study – Aside from the specific conditions covered by this study, the article reinforces the need to tailor treatments to each individual’s circumstances.
05/03/2019 – Getting Comfortable with a New CF Clinic – You will probably face a new clinic environment at least once in your life, even if you stay in the same city. [Changes in clinic staff may even count as a “new” clinic.] Gunnar Esiaison describes his experiences and offers some advice on establishing relationships.
05/04/2019 – Community Voice Survey on Evolving Needs – In the spirit of CF Awareness Month, this survey provides an opportunity to make the CF Foundation aware of your greatest needs.
05/05/2019 – You can teach a dog (me) new tricks (insulin pump and CGM) – This blog entry has two sub-stories. One, technology won’t solve your problems but it can ease the challenge. Two, you have to adapt technology to your particular circumstances.
05/06/2019 – Decreasing Acidity of Airway Liquid in Newborn CF Patients May Reduce Infection Risk, Study Suggests – Getting a head start on infection control should contribute to better long-term outcomes.
05/07/2019 – Why We Need to Stop Repressing Our Emotions – We know that emotional (mental) health is important to managing chronic disease. This blog talks about breaking stereotypes in order to build emotional health.
05/08/2019 – Research blast on… Pseudomonas – This article from UK’s CF Trust outlines three avenues of research that seek to more effectively combat Pseudomonas.
05/09/2019 – How to Love Your Body, Even If It’s Genetically Abnormal – An interesting approach to dealing with the limitations imposed on your body by CF.
05/10/2019 – Wind Sprint 64 Managing CF Related Diabetes on the Go – Living a full life means finding ways to maintain treatments away from home. In this video, Jerry Cahill describes how he manages his CF related diabetes on the go. [Remember, you can learn more from Jerry in person at CFFC’s Education Day June 8th.]
05/11/2019 – Where antibiotics fail, ‘bacteria-eating’ viruses may prevail – We have previously shared articles regarding “phages.” This article gives a little more history of the pursuit of a viable protocol.
05/12/2019 – Input Request: Advanced CF Lung Disease Guidelines – You have a chance to add your thoughts to the care guidelines for advanced CF.
05/13/2019 – Statement from Cystic Fibrosis Ireland re Soft Opt-out Organ Donation Legislation – Ireland is poised to join most European countries in the approach to organ donation. “Soft opt-out” is explained in the article.
05/14/2019i – ABO-401 Gene Therapy Shows Potential to Restore CFTR Function in Preclinical Study – This study is another indication that the promise of gene therapy may be achieved.
05/15/2019 – Diagnosed With CF at 47 – This blog is a reminder that individual CF experiences vary widely. Although it is not mentioned by the author, it also the importance of CF Awareness Month so that appropriate treatments are not delayed for decades.