A Day In The Life
Approximately 30,000 children and adults in the US have cystic fibrosis and about 1,000 new cases are diagnosed each year. In people with CF, 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. Children with CF often require frequent hospitalizations for long periods of time and child life specialists work to provide normalization, diagnosis teaching, procedural support and relief from boredom, of course! The UltraViolet blog was started by Violet’s mom Rebecca. In her words, “CF is a very complicated disease. It is very mean disease” and in her most recent post she shares with us a day in the life of the hospital for her daughter with CF. After reading it I was reminded that no matter how well we think we understand a disease and how it may effect a child and family, we can never truly know what it is like to walk a day in their shoes.
To learn more about cystic fibrosis visit http://www.cff.org/AboutCF/