Cystic Fibrosis Foundation To Receive Prestigious Health Care Award
Main Category: Cystic FibrosisArticle Date: 26 Mar 2009 - 3:00 PDT
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The Cystic Fibrosis Foundation will be honored in Washington, D.C., for remarkable leadership in improving the quality of care for people living with cystic fibrosis, by the National Committee for Quality Assurance (NCQA).
The outlook for people with CF continues to improve steadily each year because of programs fueled by the Foundation. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, the predicted median age of survival for those with CF is more than age 37, and people with the disease go to college, pursue careers, get married and have families.
"We are honored to receive the Health Quality Award from NCQA for driving improvements in care for people with cystic fibrosis," said Bruce Marshall, M.D., vice president of clinical affairs for the Cystic Fibrosis Foundation. "Increasingly, we're learning that quality improvement efforts when applied to a chronic disease can have a dramatic impact on patients' lives."
The Foundation supports and accredits a nationwide network of more than 115 care centers, which provide vital treatments and resources to patients and families. In 2002, the Foundation launched its quality improvement program to accelerate improvement in care. Since that time, key indicators of health for people with cystic fibrosis-including lung function and nutritional status-have increased across the Foundation's care center network. Improved lung function and nutrition leads to added years of life.
The Foundation was among the first health organizations to publish health outcomes data for its accredited care centers. The data is updated annually so people with CF can track the progress of their individual care centers.
Each year, the NCQA presents Health Quality Awards to individuals and organizations that show an ongoing commitment to improving the quality of health care. Previous award recipients include Senator Edward M. Kennedy, Governor Arnold Schwarzenegger and actress and advocate Mary Tyler Moore.
The NCQA is a private, not-for-profit organization devoted to improving the quality of health care by elevating the issue to the national level.
About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the leading organization in the United States devoted to curing and controlling cystic fibrosis. Headquartered in Bethesda, Md., the Foundation has more than 80 chapters and branch offices throughout the country and supports and accredits a nationwide network of 115 care centers.
Source
Cystic Fibrosis Foundation
Visit our cystic fibrosis section for the latest news on this subject.
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C.f.
posted by Dan on 26 Mar 2009 at 6:09 amChromosome Alone 1: Cystic Fibrosis
Cystic fibrosis (CF) is known as what is called an autosomal recessive genetic disorder, which means the disorder is present in such people because they lack an essential chromosome, which is what delivers DNA.
With cystic fibrosis, each of your parents contributed to you what are known as CFTR protein genes that were mutated, meaning the genes are defective, which is why one acquires CF. The disease was first recognized during the 1930s. The name of the disease is derived from the frequent scarring of the pancreas associated with CF. CF has also been called Anderson’s Syndrome in the past.
It is the most common hereditary disease in the United States. Also, the disease is almost entirely present in those who are ethnic white people and those of European decent. About 30,000 people in the U.S. have Cystic Fibrosis. Also, and for reasons unknown, men live longer than women with CF. This is disease is rare, yet devastating for one who may have it.
This is a multi-system disease that can be deadly, and most with CF never lived past 5 years of age until the 1950s. Today, about 40 percent of cystic fibrosis patients are adults. With proper dietary supplements, and antibiotics to treat lung infections, the lifespan of CF patients continues to increase.
Normally, CF is diagnosed when one is an infant- based on such things as low birth weight. Malnutrition is common due to the disease preventing the body from absorbing nutrients, and certain vitamins, such as vitamin D,E,A, or K. About 85 percent OF CF patients are deficient with such vitamins. In addition, genetic screening is now done on all neonates for up to 29 genetic disorders in most states in the U.S.
Aside from the CF patient experiencing often pancreatic fibrosis, CF also causes lung infections and digestive problems as well. With cystic fibrosis, the glands in your exocrine system, glands that normally produce thin and slippery fluids for your internal organs instead produce thick mucus that essentially clogs your organs, such as your pancreas (mucovisidosis). This thick mucus also contributes to lung dysfunctions and infections as well.
There are pharmaceuticals that have yet to be approved designed to treat cystic fibrosis patients, which appear to be promising for those affected by this disease, and improving their lifestyle, if not their lifespan..
The CF patient may want to consider seeking out those doctors and hospitals who are specialists with cystic fibrosis for evaluative reasons and treatment reviews that will be best for them to address the complications of cystic fibrosis.
http://www.cff.org
Dan Abshear
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