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New hope for individuals with Cystic Fibrosis

  • Sometimes it can feel lonely to have a genetic condition, particularly if you aren't allowed to hang out with others like yourself. According to the Cystic Fibrosis Foundation, patients with Cystic Fibrosis (CF) are recommended to avoid close contact with others affected with CF. This includes sharing any item coming into contact with their mucus membranes, like sharing the same cup, and keeping at least a three foot distance from each other at all times – as this is the radius for a simple germ-spreading cough.  For most people with CF, this means not hugging, kissing, or shaking hands with other people with CF. Thorough hand washing and good hygiene are also recommended. While these measures help reduce the chance of spreading severe bacterial infections, they can also create a sense of loneliness for a patient without direct contact with others affected with CF. Fortunately, Cystic Fibrosis organizations and recent drug developments may offer support to bring the CF community closer.

    Cystic Fibrosis is a genetic condition that affects 30,000 children and adults in the United States. This condition causes the body to produce thick, sticky mucus affecting the airways, digestive system, reproductive system and other organs and tissues. This mucus builds up in tissues inhibiting function and causing damage – most notably in the lungs. It also leaves the lungs vulnerable to dangerous bacterial infections when bacteria gets caught in the sticky mucus, causing inflammation, chronic coughing, and wheezing.

    Cystic Fibrosis Research Inc. (CFRI, http://www.cfri.org/home.shtml) is an organization helping fund research for CF treatments, as well as offering personal support for patients and families affected by CF. They offer an annual retreat for teens and adults affected by CF, along with their families, to gather and learn about CF, share stories, and build friendships to enhance solidarity within the community. 

    As well as the emotional support the retreat offers, there may also be new hope in the drug development pipeline, called VX-770, or KALYDECO, which works on the underlying cause of CF instead of treating the symptoms. Currently, KALYDECO is aimed at those with at least one copy of G551D, a specific gene mutation that accounts for approximately 4% of the CF population. The pharmaceutical company that develop the drug, Vertex Pharmaceuticals, submitted KALYDECO to the FDA in October of this year and is hoping for approval sometime in 2012. A corresponding drug under development, VX-809, aims at those with the most common type of gene mutation causing CF, Delta F508. Trials combining both VX-809 and KALYDECO show improved lung function in the user. With drugs like these leading the way for others pharmaceuticals that might help a wider population of CF patients, the CF community may be able to access the support that has been out of reach in the past.

    To learn more about CF visit http://www.babysfirsttest.org/conditions/CF

    Resources used:

    http://ghr.nlm.nih.gov/condition/cystic-fibrosis

    https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/ 

    http://www.cff.org/research/DrugDevelopmentPipeline/

    http://www.nlm.nih.gov/medlineplus/cysticfibrosis.html

    http://www.vrtx.com/current-projects/drug-candidates/VX-809.html

    http://www.cysticfibrosis.com/

    https://www.cff.org/News/News-Archive/2011/FDA-Grants-Six-Month-Priority-Review-of-Kalydeco-(VX-770)-%E2%80%94-First-Potential-Drug-to-Target-Underlying-Cause-of-Cystic-Fibrosis/

     

    “Infection Control Recommendations for Patients With Cystic Fibrosis: Microbiology, Important Pathogens, and Infection Control Practices to Prevent Patientto-Patient Transmission” by Lisa Saiman, M.D., M.P.H.; Jane Siegel, M.D.;and the participants of the CF Foundation’s Consensus Conference on Infection Control.

     

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