Cystic fibrosis is an invisible disease. However, there are ways to tell if someone has CF through some stealthy observation. Below are 9 ways to determine if someone you meet has CF.
These are a little tongue in cheek for our CF warriors — a little CF humor — but the reality is, CF takes a toll on the body and impacts lifestyle in many ways that aren’t always obvious to the layperson, or mimic other illnesses. To help our CF supporters who don’t have CF, we’ve added a brief explanation after each observation.
1. The person before you on the treadmill departs. You get on right after him and there is salt all over the handles and screen. The person before you likely has cystic fibrosis.
While everyone can have salt residue on their skin during an intensive workout that causes them to sweat, especially if they don’t drink enough fluid, those with CF have an inability to regulate transport of chloride (a salt component) the way other people do. It causes the ultra-salty sweat CF patients, a dehydration risk.
2. You’re at a bar and there are four people that look drunk. The guy at stool one has a bottle of scotch. The guy at stool two has a bottle of gin. The guy at stool three has a bottle of vodka. The guy at stool four has a box of Pulmozyme®. The guy at stool four likely has cystic fibrosis.
Pulmozyme® (dornase alfa)is a synthetic protein that breaks down excess DNA in the pulmonary secretions of people with cystic fibrosis to improve pulmonary function. It can cause temporary changes in speech and voice.
3. You’re at a nice restaurant and Jim wore a suede vest, Larry wore a tuxedo vest, and Seth wore a Hill-Rom vest. Seth likely has cystic fibrosis.
Hill-Rom is a company that specializes in a variety of medical devices, including mobile vest airway clearance systems used by CF patients.
4. Daniel is 90 and takes 10 pills before a meal. Barry is 80 and takes 6 pills before a meal. Jodi is 25 and takes 15 pills before a meal. Jodi probably has cystic fibrosis.
While elderly people these days take an average of 10 pills to take daily, this is not the norm for a healthy young person. CF patients take between 10-30 pills daily on average, with some taking more. This is in addition to the breathing treatments beginning immediately upon waking and throughout the day.
5. Richie ate 2,000 calories at dinner and weighs 400 pounds. Jasmine ate 2,500 calories at dinner and weighs 350 pounds. Devon ate 7,000 calories and weighs 150 pounds. Devon may have an incredibly high metabolism, but unless he is a professional athlete, he likely has cystic fibrosis.
The ongoing obstruction of air passages and buildup of mucus can lead to recurrent infections, irreversible lung damage, and other serious complications such as malnutrition, diabetes, and more for people with CF. There is a long list of conditions common for those with CF that could affect weight gain.
6. Butch smells like saltwater and has a surfboard. Jeff smells like saltwater and has his swim trunks on. Tom smells like saltwater and has a nebulizer. Tom likely has cystic fibrosis.
Salt residue stays on the surface skin of those with CF and is especially noticeable in hot weather.
7. Joel has a stamp from a nightclub on his hand and says he’s been clubbing. Pete has alcohol on his breath, comes home at 3 a.m. and says he’s been clubbing. Tony’s finger and toenails are soft, look like upside-down spoons, and he says he’s been clubbing. Tony’s clubbing isn’t much fun because he has the best odds of having cystic fibrosis.
Nail clubbing is enlargement of the fingertips (or toes) due to proliferation of connective tissue between the fingernail and the bone, creating the inverted spoon look and white nail beds. “Sponginess” of the nail bed beneath the cuticle can make the nail appear to be floating. Clubbing can occur as a result of CF and other pulmonary damage.
8. Brian ate a really greasy meal, gets an upset stomach, uses the restroom and 10 minutes later no one knows the bathroom was even used. Jeff ate a fatty snack, gets a stomachache, uses the restroom and 10 minutes later no one suspects anyone had occupied the restroom. Scott ate an entire pizza, gets an upset stomach, uses the restroom, needs a plunger, hits the fan, uses 2 bottles of pledge, the fire department comes, the house is evacuated and Scott does the walk of shame out of the house. Scott likely has cystic fibrosis.
About 90 percent of people with CF have sticky mucus that blocks ducts in the pancreas and prevents enzymes from reaching the small intestine to digest food. The undigested food in the intestines can cause loose, greasy, floating stools or constipation and blockages.
And finally:
9. Graham asks John if CF and asthma are the same
Cystic fibrosis is a hereditary terminal disease that can lead to other life-threatening issues, and requires rigorous daily treatment. The cause of CF is a lack of a gene sequence that causes the airways to be clogged with thick secretions and at this time there is no cure. It also affects the sodium levels in the body and the ability to absorb nutrients, often leading to malnutrition. Asthma is a reactive airway disease that can be present at birth or occur at any age due to an environmental pollutant. While it can be severe enough to cause death, especially in the elderly or poor, Cystic Fibrosis is a much more severe chronic disease, with an average life expectancy of less than 40 years in the U.S.
Donate to The CF Warrior Project today and order your copy of the CF Warrior Project to help us raise hope and find a cure for cystic fibrosis.