It’s a Marathon Not a Sprint – by Nicholas Breton
Approximately 10 years ago, my mother had called me on the phone frantically telling me she had seen a news blurb about a cure for Cystic Fibrosis being found. She is so hopeful of that day that she is more believing in news articles regardless of the misrepresentations that the …
How Breathwork Can Help Cystic Fibrosis
Deprived of a Beneficial Therapy? Although I’ve been in and out of hospitals since my diagnosis of Cystic Fibrosis at 9 years of age, I have never had a CF specialist of any kind teach me the basics on how to breathe correctly or optimally. This sounds a bit bizarre …
DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)
**Note: this is not medical advice and this method has not been approved by any medical professionals or suppliers. It is just a workaround method used by someone with CF. It should only be tried on nebulizer parts that can be boiled** My DIY nebulizer sterilizer hack I have a confession: …
A New Hope for CF! (Planetary Biosciences Review – Jan 2018)
To brighten this post up, I will review the exciting supplements Indrepta and TauriNAC using Star Wars parlance… I’m a 46 year old CFer with my original lungs, living in London, England. Following a virus in November last year, the Phantom Menace of mucous was giving me a hard time …
D3forME Transdermal Vitamin D Patch: do you qualify?
Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic Fibrosis Patient Assistance Program. Written by Tamika Grubbs, CF nurse consultant D3forMe proudly announces participation in Healthwell’s Cystic Fibrosis Patient Assistance Program. The D3forME Transdermal Patch is for patients who can’t absorb enough …
Orkambi has simply changed my life…a Cystic Fibrosis reflection
A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat Cystic Fibrosis. This post was originally published on our forums by member RubyRoseLee. Two Years Ago “I’ll never forget the emotions I was feeling that morning. I had just gotten …
Lung Clearance Index Improved in Children Ages 6-11 on Ivacaftor/Lumacaftor
Ivacaftor/Lumacaftor Improves Lung Clearance Index Score In Children A new phase 3 study, led by The Hospital for Sick Children at the University of Toronto, Canada, has been completed on the CF treatment ivacaftor/lumacaftor in children ages 6-11 with two F508-del CFTR mutations. In a group of 206 children from …
Outcomes and Tolerances in Cystic Fibrosis Treatment Lumacaftor/Ivacaftor
Last month, the results of a study were published that looked at the progress and side effects of the cystic fibrosis treatment lumacaftor/ivacaftor in 116 people with CF during a year after starting the medication. 46 (39.7%) people reported side effects related to lumacaftor/ivacaftor, and of the side effects, 82.2% …
New on Cystic Fibrosis Social Media (@knowCF)
What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …
Orkambi Study On Children Age 6-12 With DDF508: Cystic Fibrosis Treatment
Results are in from a 24-week study of Orkambi (lumacaftor/ivacaftor – a medication used in cystic fibrosis treatment) in 58 children with cystic fibrosis age 6-12 with two copies of the F508-delta mutation. Researchers were looking to examine the safety and efficacy of the CFTR potentiator on this age group and …