What is Cystic Fibrosis (CF)? In my words and the CFF.

As a mother of a child with CF…. CF never sleeps, it never takes a break from its job within Maylie. My viewpoint of what Cf is….
-CF causes individuals to appreciate every moment that they have on this earth.
-CF brings about strength in young children that you can hardly believe is possible, and creates heros and warriors out of every individual thriving with CF.
-CF causes parents to become the advocates and fighters for their children, never taking the backseat, never forgetting the importance of each day and each decision made.
-CF creates a support system between parents of children with CF that you otherwise would never experience.
-While CF is a difficult disease to accept as a parent, it is a disease that makes us all stronger and gives our children the experience to be our greatest teachers on this earth.
-CF is something we will fight and WIN!!

They say that CF is:
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 40% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is more than 37 and rising everyday!!