Wednesday, February 2, 2011

Sharing the Love For Quinn: What is CF?

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause 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
  • frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the mid-30s.

The Cystic Fibrosis Foundation

Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference (from http://www.cff.org/AboutCF/).

What does this mean for Quinn?

Quinn fights lung issues by doing two breathing treatments a day plus two sessions of chest percussion therapy. He takes enzymes any time he eats because his pancreas does not make the enzymes he needs to break down his food. He takes three additional vitamins at this point plus two Prevacid pills a day to block acid due to acid reflux. He needs to eat 1800 calories or more a day. He has a feeding tube we only use at night to help him get all those calories. He is the only kid I know who double checks his own bowel movement to see if there is oil in it. He knows to tell us because it is a sign of malabsorption. Any time he coughs we go on high alert in case it is an indicator of something more complex with his lungs. Using hand sanitizer is a habit we are all well-trained in.

These are a few ways that Quinn experiences Cystic Fibrosis. Every person's journey is different and their experience with the disease is different. If you would like to help Share the Love for Quinn you can donate to CF research with Team Win with Quinn.

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