Cystic Fibrosis Research

Hello. My name is Tracie. I would like to discuss a big disease that nobody really knows about. It is called Cystic Fibrosis, or CF. I was very unaware that this disease even existed until my little one year old neice was diagnosed with it. I would like to give a little backround information that would help everyone understand what this is and what causes it.

What Is Cystic Fibrosis?

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene causes the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

• 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
• greasy, bulky stools.

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 80% of patients are diagnosed by the age of three.
• At least 40% of the CF patient population is age 18 or older.
• In 2005, the median age of survival was nearly 37 years.

As of today, there is no cure for Cf, but with all the progress that has been made since my neice was diagnosed ten years ago, there is hope in sight. I really hope that everyone will know and fimilarize themselves with this disease, becuase it is a deadly one. I see what my neice goes through and it is very hard for a ten year old to have to face this. Luckily she has parents and family that loves and supports her very much. But not only dealing with this disease, she is also battling type 2 diabetes. She is a very determained little girl and I hope that everyone will take time to learn more.

To learn more and what you can do to help, please contact the Cystic Fibrosis Foundation. You can find them on the web at www.cff.org and find a local chapter that you can get involved in.

Thank you so much for your time.