Tuesday, February 8, 2011

Tidbit Tuesday - What is Cystic Fibrosis?

Hello readers, Kara here with today's tidbit.How many of you out there have heard about Cystic Fibrosis? Okay, how many of you really know what CF is? Sadly CF is not a disease a lot of people know about, and today I want to share my story, and share with you all what CF is. I am living with this deadly disease daily, and the past 6 years I have had numerous surgeries, many close calls, and not only has it taken a toll on my health in general, it has taken a toll on my marriage, and my role as a mother. The information I will be giving you is all from the webiste www.cff.org (Cystic Fibrosis Foundation) I kindly ask you to take the time and read about CF, spread the word, I would like to get this disease more national attention.

What is cystic fibrosis?
Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.
Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.

Who gets cystic fibrosis?
Approximately 30,000 children and adults in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races.
The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:
  • Very salty-tasting skin
  • Persistent coughing at times producing phlegm
  • Frequent lung infections, like pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth/weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty in bowel movements
  • Small, fleshy growths in the nose called nasal polyps
New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations (defects) a person with the disease has. There are more than 1,400 different mutations of the CF gene.

How do people get cystic fibrosis?
Cystic fibrosis is a genetic disease. This means that people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.
To have cystic fibrosis, a person must inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene, but do not have the disease themselves), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

What is the life expectancy for people who have CF (in the United States)?

There is no way to accurately predict how long a person with cystic fibrosis will live, as many different factors affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases.
In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantage of starting specialized treatments that were not available even a decade ago.
Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.
In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2008.
The steady rise of the median predicted age of survival suggests how improvements in treatment and care are advancing the lives of those with CF. In 1955, children with CF were not expected to live long enough to attend grade school. Today, thanks to continued Foundation-supported research and specialized care, an increasing number of people with cystic fibrosis are living into adulthood and leading healthier lives that include careers, marriage and families of their own.

These are pretty much the basics, there of course is much more to read at you can do that by visiting www.cff.org

Now, I would like to show you what a CF patients lungs look like, and what a person who does not have CF lungs look like

Normal Chest X-ray

CF X-ray

PLEASE help spread the word about CF, do what you can to help find a cure, I'm fighting for my life, as well as may of my friends!! Thank you for taking the time to do so.



Mars February 8, 2011 at 8:03 AM  

Hey Kara bear! Been following your CF stories and I'm glad that you do tell such because you educated me a lot. Hugs.

Melissa February 8, 2011 at 9:04 AM  

Thank you so much for sharing :) You are so brave!

Kristal February 8, 2011 at 11:55 AM  

Thank you for your post! My Best Friend has a daughter with CF. Good to see people learning more about it through your sharing!

Anonymous,  February 12, 2011 at 11:46 AM  

Thanks for sharing your story and providing some really useful information!

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