sputum cup
Living With CFResearchRespiratory DiseaseTreatments

New Antibiotic Discovered in our Noses could help treat Staph and MRSA

Staphylococcus lugdunensis, a bacteria that kills staph and MRSA, could someday add to the arsenal of weapons that help people with Cystic Fibrosis. Why do some people carry Staphylococcus aureus bacteria in their noses and others don’t? Scientists at the University of Tübingen in Germany asked this question, and they found …

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vendanta
Gastrointestinal DiseaseLiving With CFTreatments

Bugs into Drugs: Beyond Fecal Transplants

Read about the drug company: Vedanta “Vedanta is a little different. It focuses on isolating specific bacterial strains that scientists believe can have a specific biological effect, and making those into “rationally defined” drugs. That’s different than a fecal transplant, in which physicians take feces loaded with incredibly diverse bacteria …

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GeneticsLiving With CFTreatments

DNA ‘cages’ deliver drugs with zap of light

Very interesting article relating to drug delivery via ‘dna cages’. Getting drugs to go just where you want them inside the human body is no easy task, and using high doses of chemicals that are carried by the bloodstream to the wrong tissues or organs can lead to toxic side …

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patient assistance controversy
AdvocacyFinancialLiving With CFTreatments

Understanding Pharma Controversies in the News

Many people have heard of the company, Turing Pharmaceuticals, which last year raised the price of a drug by over 5,000%, but most people don’t understand how and why that was possible. Looking at the issues behind the Turing Pharmaceutical controversy of this past year is worthwhile even though the …

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transplant
FAQsLiving With CFResourcesTransplantsTreatments

Cystic Fibrosis treatment: lung transplant facts and member experiences

Lung transplantation is something a person with Cystic Fibrosis might consider late in the progression of the disease, when life expectancy is about 1-2 more years and quality of life is severely compromised. It is a last resort in terms of Cystic Fibrosis treatment, but can be a life-saving procedure. …

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ContestsLiving With CFTreatments

Wabi Baby Steam Sterilizer Contest

Photography Contest for Cystic Fibrosis Awareness MonthEnter to Win! Take a photograph of your system for cleaning CF respiratory or feeding tube equipment and enter to win a Wabi Baby Steam Sterilizer & Dryer – the only commercial steam sterilizer to be tested on CF pathogens. Cleaning nebulizer parts is an important part …

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sinuses
FAQsLiving With CFRespiratory DiseaseTreatments

Cystic Fibrosis symptoms: Mayo clinic’s sinusitis treatment suggestions

For many patients, chronic sinusitis is a part of their many Cystic Fibrosis symptoms. From the Mayo Clinic, about sinusitis: The goal of treating chronic sinusitis is to: Reduce sinus inflammation Keep your nasal passages draining Eliminate the underlying cause Reduce the number of sinusitis flare-ups Treatments to relieve symptoms …

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pseudomonas
Clinical TrialsLiving With CFTreatments

In the News: Inhaled Levofloxacin & QIDP Designation

Raptor Pharmaceutical’s MP-376 (Inhaled Levofloxacin) granted QIDP Status by the FDA on March 16, 2016. What is Qualified Infectious Disease Product (QIDP) Designation? QIDP status gives a drug priority review by the FDA, eligibility for Fast Track designation, and an extension of marketing exclusivity. This incentivizes pharmaceutical companies to devote …

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EnzymeFAQ
FAQsGastrointestinal DiseaseLiving With CFTreatments

Enzymes – Frequently Asked Questions

Newly Diagnosed/Infancy The doctors want me to give the enzymes to my baby in food but he’s only a week old? I thought we weren’t supposed to give solids that early. My baby nurses by grazing. When do I give more enzymes? I’m supposed to give ½ an enzyme. How …

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bubby's enzymes
Gastrointestinal DiseaseLiving With CFParentingTreatmentsVideo

Toddler Bubby, taking enzymes for Cystic Fibrosis treatment

80%-90% of people with Cystic Fibrosis need to take enzyme capsules before they eat, as part of their Cystic Fibrosis treatment. In Cystic Fibrosis, as the lungs produce thick, sticky mucus, the pancreas also makes the same type of mucus that blocks the release of enzymes needed for digestion. When …

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