If you’ve stumbled upon this blog and have no idea what cystic fibrosis is, then many of my posts may not make much sense. Here’s a brief explanation of CF.
Cystic Fibrosis is a genetic disease the affects the lungs and digestive systems of 30,000 people in the United States (70,000 worldwide).
The following was taking from www.cff.org (please visit the site for additional details about the disease, raising awareness, or making a donation).
“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
- 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,
- 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.
- 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.
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.”
This tells a lot about the disease but it leaves some important details out as well. Cystic fibrosis greatly impacts the quality of life for individuals. It requires hours of nebulized treatments and airway clearance daily in order to ensure lung health. Due to the sticky mucus in the lungs, it leads to repeated lung infections. These lung infections require weeks of oral or IV antibiotics and sometimes result in hospital stays. CF means never being able to hang out with others who have the same disease as you do because of the risk of cross-contamination (One CFer has different bugs than another CFer and just by coughing they can pass the germs back and forth). With CF, you have to make sure you stay away from germs as much as possible (because everything you inhale sticks inside your lungs) and it means constantly struggling to keep weight on – even if you eat way more than the average person every day. Having CF also means coming to terms with your mortality at an early age – much earlier than anyone should have to.
The 70,000 people around the world (and 1,000 new cases each year) desperately need your help for a cure. Please help us by raising awareness, participating in a CF walk/run, or donating to the cause. We greatly appreciate each additional breath you give us through your efforts. Thank you!