Cystic Fibrosis

Hi! My name is Norma Kennedy Plourde, and I live in Baker Lake, New Brunswick, Canada. I have Cystic Fibrosis. My CF affects mostly my lungs and my digestive system. I get frequent respiratory infections, so I take antibiotics a lot, and my pancreas doesn't secrete enzymes, so I take pancreatic enzymes, plus a lot of other medications. I also have Rheumatoid Arthritis. I am 48 years old, have been married for 28 years, and have a 26 year old daughter without cystic fibrosis. I am a Registered Nurse, and worked in a hospital setting for 9 years, but no longer work due to my illness. I would like to educate and provide information about CF to as many people as I can. It is a genetic disease that affects approximately 3,000 people in Canada, and 30,000 in the US, plus many more throughout the world. It is a disease that affects the exogenous secreting glands of the body, and generates thickened secretions, therefore blocking proper functioning of certain organs. The organs most affected are the lungs and pancreas, therefore affecting breathing and digestion, but certain other organs are affected also. There is no cure as of yet, but we hope there soon will be. Research is ongoing, and great strides are being made! Whereas 40 years ago, not many people with CF lived past childhood, nowadays many can live into their mid 30's or more. Unfortunately, many people with CF are still dying way too early. Please support CF research...that is our only hope. I hope that my site will help you to learn more about CF.

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bullet Symptoms of Cystic Fibrosis
bulletStories of how difficult it was for some to get diagnosed with CF
bulletIf it's not CF, then it could be one of these diseases
bulletHistory of Cystic Fibrosis
bulletStatistics & CF
bulletCommon Misconceptions with CF
bulletEffects of CF
bulletRespiratory
bullet Pseudomonas
bulletBurkholderia cepacia and other Burkholderia species
bulletABPA (Allergic Bronchopulmonary Aspergillosis)
bulletOther cystic fibrosis bugs
bulletSinusitis
bulletPolyps
bulletHemoptysis
bulletThe Impact of Hygiene and Microbiology on CF Patients
bullet Other Lung Complications and Treatments
bullet How CF Damages Lungs
bulletLung Sounds
bulletAsthma
bulletGastro-Intestinal System
bulletPancreatic Insufficiency
bulletGERD (Gastro-Esophageal Reflux Disease)/Hyperacidic Stomach
bulletMeconium Ileus
bulletCF Liver Disease
bulletPrimary Biliary Cirrhosis
bulletGallstones & Biliary Colic
bulletOther Various CF-related Gastrointestinal Problems
bulletOther
bulletDiabetes
bulletCF and Arthritis
bullet Infertility New: Male Fertility Tests for Home Use
bullet Osteoporosis
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bulletVestibular Disorders
bulletDiaper Rash
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bulletGenetics
bulletO2 Sats (% of Oxygen Saturation in the blood)
bulletChest X-Rays, CT Scan, MRI, PET Scan, etc...
bulletNasal Potential Difference Test (NPD)
bulletFecal Fat Test
bulletBlood, Urine, Abdominal, Lung and Stool Tests
bullet Pre-Conception, Pre-implantation, Pre-natal and Newborn Screening for CF
bulletOther Diagnostic Tests for CF
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bulletCF Meds in General
bullet Antibiotic Desensitization
bulletNew meds for cystic fibrosis being studied
bulletGetting meds paid for by insurance companies and saving money overall
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bulletPharmacies and Drug Companies
bulletSites to search for info about various drugs
bulletVarious Drug Sites
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bulletTube Feeding
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bulletTPN (Total Parenteral Nutrition)
bulletWeight Gain Help
bulletNasal Surgery
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bullet Guidelines Issued for Cystic Fibrosis Evidence-based recommendations regarding long-term use of medication for maintenance of lung function in patients with CF from the Pulmonary Therapies Committee (of the CFF) in the US
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bulletIn the US
bullet"Treating the adult-specific issues that come along with CF requires the attention of providers who have expertise in caring for this population, said Bruce Marshall, MD, vice president of clinical affairs for the Cystic Fibrosis Foundation and an associate professor at Johns Hopkins. Of the 117 national CF centers accredited by the organization, 90 have approved adult programs." (Quoted from this article)
bulletCF Clinics in Canada
bullet Canadians: "Services and Resources Manual", by the Canadian Cystic Fibrosis Foundation
bullet Canadian Cystic Fibrosis Foundation Annual Report 2008
bulletCF Clinic/Center Web Sites
bullet Standards of care for patients with cystic fibrosis: a European consensus
bullet Cystic Fibrosis Adult Care: Consensus Conference Report
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bulletInsurance, working, and various types of assistance (financial and other)
bullet Remarkable People with CF
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bulletTraveling tips for those who have CF
bulletSupport
bulletJoin Cystic-L THE BEST DISCUSSION GROUP IN MY OPINION!  This is for people with CF (pwcf), parents of children with CF, spouses of, children of, and friends of pwcf, and for anyone else just wanting to learn more about it, such as students, teachers, medical personnel, etc...if you have any questions that may not have been answered here on these pages, please join our group! I have been with them since August of 1996, and love it!
bullet Archived Messages from Cystic-L, entirely searchable, it's password protected; you will have to get a password to read the messages, but it's easy to do, and free!
bullet Click here to get a password, or to change the one you have, or get a new one if you forgot yours
bulletCystic-L STATS 349 subscribers from 12 countries as of May 21, 2009
bulletPersonal CF Pages These are made by people of all ages with Cystic Fibrosis (or people close to them), from babies to older adults.
bulletDealing with CF
bulletHow to Tell People That You Have CF
bulletVarious Hints and Tips Dealing with medication organization, keeping track of medical records and results, unpleasant odors
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bulletPictures of people having links to Cystic Fibrosis [Including parents and other relatives & friends of pwcf (people with CF); people having various links to CF; PWCF who have had children, and memorials to those who have passed away from CF]
bullet Transitioning from Pediatric to Adult CF Care
bulletOther CF Sites
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bulletScuba Diving
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bulletMa page de Fibrose Kystique en français
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Picture of my hometown, Lac Baker

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