Egg cooker nebulizer sterilizer white
AdheranceLiving With CFTreatments

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: …

READ MORE →
A new hope for CFers
AdvocacyAlternative MedicineGeneticsLiving With CFSupplementsTreatments

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 …

READ MORE →
VitaminD_patch2
FinancialResourcesTreatments

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 …

READ MORE →
200679-path-leaves-forest-sunlight-mist-trees-grass-sun_rays-nature-landscape-dirt_road-748x479
featured_memberLiving With CFTreatments

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 …

READ MORE →
LCI image small
Clinical TrialsLiving With CFResearchRespiratory DiseaseTreatments

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 …

READ MORE →
graphic by By Lbudd14 (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
Living With CFResearchRespiratory DiseaseTreatments

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% …

READ MORE →
social media feature pic jan 2017
JoinLiving With CFTreatments

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 …

READ MORE →
Clinical TrialsResearchRespiratory DiseaseTreatments

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 …

READ MORE →
hearing loss
Living With CFRespiratory DiseaseTreatments

Risk of Hearing Loss from IV Aminoglycosides in Cystic Fibrosis

Cumulative exposure to IV tobramycin and amikacin, which are critical for treating cystic fibrosis infections, increases the risk of hearing loss. A study, “The cumulative effects of intravenous antibiotic treatments on hearing in patients with cystic fibrosis,” published last month in the Journal of Cystic Fibrosis discusses how IV tobramycin, …

READ MORE →
concert pills
Living With CFNews & EventsResearchTreatments

Treatment for Cystic Fibrosis: Vertex Acquires Concert’s CFTR Potentiator CTP-656

Vertex Pharmaceuticals recently purchased the Phase 2 cystic fibrosis potentiator drug CTP-656 from Concert Pharmaceuticals. The deal is estimated to be worth $250 million dollars. CTP-656 is intended to be a longer-acting, once daily version of Vertex’s drug ivacaftor, which aims to restore CFTR function in treatment for Cystic Fibrosis. …

READ MORE →