the story behind cystic fibrosis
DESCRIPTION
This slideshow explains what CF is and what people who have it go through. In the pictures are my little cousins who have the disease. As you can see they look very normal, but they go through a lot everyday. So please help make their lives easier and donate to the Cystic Fibrosis Foundation. Thank you for your time! You can contact me at [email protected] or donate right on my homepage: http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=5867&idUser=266160TRANSCRIPT
Cystic Fibrosis
Jessica Skelton
What is Cystic Fibrosis?
Cystic Fibrosis is an inherited disease. It affects the lungs and digestive system of about 30,000 people in the United States (70,000 worldwide). It causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also hurts the pancreas and stops natural enzymes from helping the body break down and absorb food.
Testing for the Disease.
There are several ways to test for CF, but a few are:Genetic Carrier Testing — Most carriers of the defective CF gene do not have symptoms. To have CF, a child must inherit one copy of the defective gene from each parent. Each time two carriers have a child, the chances are: 25% the child will have CF; 50% the child will only carry the CF gene; and 25% the child will not carry the gene or have CF.Newborn Screening — Newborns can benefit greatly from being diagnosed and medicated early on, which can improve growth, improve lung function, reduce hospital stays, and allow them to live longer. Newborn screening is not 100% accurate, but it may lead to tests that can rule out or confirm a diagnosis.
Testing (continued…) Sweat Test — If a
person has symptoms of CF, it is common that a doctor have this test done. It is a simple and painless test, and is the best way to diagnose CF. It measures the concentration of salt in a person’s sweat. A high salt level means they have CF.
The Symptoms are…
•Very salty-tasting skin; •Persistent coughing, at times with phlegm; •Frequent lung infections; •Wheezing or shortness of breath; •Poor growth/weight gain in spite of a good appetite; and •Frequent greasy, bulky stools or difficulty in bowel movements.
Treatments...Though there is no cure for CF, there are many treatments for the disease. Here are a few:Inhaled Drugs, such as the ones shown in the pictures to the right, which are used because they reach the airways quickly and easily. A few treatments that are taken through inhalation are mucus thinners, antibiotics used to treat infections, such as lung infections, another is to bring more water into the airways so make it easier to cough up mucus.
More Treatments…
Antibiotics are used to fight infection-causing bacteria, which are mainly in the lungs. Antibiotics may come in three different forms: oral, IV’s, or inhaled.
Chest Physical Therapy or the chest vest, such as the one shown on the right, vibrates the chest at a very high frequency to loosen mucus so it can be easily coughed up. When the child is under two, the vest cannot be used. In this case, the person performing the therapy would cup their hand and tap on the child’s left side, right side, chest, and back for several minutes to break up mucus.
65 Roses StoryChildren who cannot pronounce “Cystic Fibrosis” tend to find it
a lot easier to say “65 Roses”. Here’s why:
Mary G. Weiss became a volunteer for the CF Foundation in 1965 after finding out her three sons had CF. Her job was to call every civic club, social and service organization finding financial support for research. Mary's 4-year-old son, Richard, listened to his mom as she made her calls.
After a few calls, Richard told his Mom, "I know what you are working for." Mary was curious because Richard did not know what she was doing, as a matter of fact, he did not know he had CF. So Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." This left her speechless and brought tears to her eyes. She then told him, "Yes Richard, I'm working for 65 Roses.”
Great Strides
ID Walk City Walk Site Date of Walk Check In Time1 Billerica Boys and Girls Club 5/17/2009 9:00AM2 Dedham Endicott Estate 5/17/2009 11:00AM3 Hyannis Veteran's Park 5/17/2009 12:00PM4 Lexington Hayden Recreational Area 5/16/2008 9:00AM5 Lynnfield Town Common 5/17/2009 11:00AM6 Mendon Southwick's Zoo 5/17/2009 9:00AM7 North Andover Hermann Youth Center 5/16/2009 9:00AM8 Northampton JFK Middle School 5/17/2009 9:00AM9 Plymouth Plymouth Memorial State Park 5/17/2009 9:00AM
10 Quincy Waterworks at Marina Bay 5/17/2009 9:00AM11 Shelburne Falls Buckland/Shelburne Elemantary 5/17/2009 1:00PM12 Wakefield Town Common 5/16/2009 9:30AM13 West Springfield Mittneaque Park 5/17/2009 9:00AM14 Worcester Town Common 5/17/2009 11:00AM
Great Strides are steps taken to make a difference in helping to find a cure for Cystic Fibrosis. Helping to make CF stand for Cure Found. These are a few of the walk sites in Massachusetts for May of 2009.
References•Cystic Fibrosis Foundation
•What is Cystic Fibrosis?
•Medline Plus
•In the pictures are my three little cousins, Alyssa, 6, Kailey, 3, and Addisyn, 17 months. Alyssa and Addisyn both have CF. Kailey may be a carrier or may be free of the disease completely.
•Cystic Fibrosis Video -I tried to get this video on one of the slides but because it is on you tube it would not let me. I think it is worth watching.