May is Cystic Fibrosis Awareness Month. I thought instead of telling you my personal story again that I’d give you 10 unusual facts about cystic fibrosis:
10) Saltwater is a natural treatment for cystic fibrosis because it thins the sticky mucus. Doctors in Australia noticed surfers with cystic fibrosis were doing much better and eventually a drug called hypertonic saline was invented.
9) People with cystic fibrosis often have salty skin because we have faulty chloride channels. In the early days, moms and dads kissed their children and realized they tasted like salt which caused them to get medical attention. A child was then diagnosed by using a sweat test which measures the amount of salt in your sweat.
8) Cystic fibrosis was discovered by Dr. Dorothy Andersen. Originally, people thought young children who were dying from cystic fibrosis actually had celiac disease but she discovered an unusual scarring of the pancreas so Andersen originally called the disease “cystic fibrosis of the pancreas” which later was shortened to cystic fibrosis.
7) Lung transplants are not a cure for cystic fibrosis. While it does get rid of the cystic fibrosis in the lungs, the rest of a person’s body still has the disease. Once a person receives a lung transplant, that person is also at risk for rejection.
6) Cystic fibrosis is not just a lung disease. It affects the reproductive system, the digestive system, the sinuses, the liver, the kidneys and several other parts of the body. Those of us with CF are also at risk for certain bowel and duct cancers.
5) Cystic fibrosis is not contagious. It is a genetic disease and therefore you are born with it. Some people are diagnosed later but it’s important to get treated as soon as possible. This is why it is so important to provide newborn screening in all states. To get cystic fibrosis, each parent must possess the CF gene and then there is a one in four chance the child will have the disease.
4) 97% of males like me with cystic fibrosis are infertile because they lack the vas deferens which is the bridge that transports sperm to the urethra during sexual intercourse. Women are also affected thanks to having thicker cervical mucus but a majority are still fertile.
3) CFTR modulators are available for 90% of the cystic fibrosis population. Unfortunately, that leaves 10% of the population without one either because of genotype, the country they reside, transplant status, age and how their body tolerates the drug. CF modulators are not a cure but are a way to improve symptoms. The median life expectancy for those with cystic fibrosis is the United States is currently 57 years which is four times greater than when I was born in the early 1970’s.
2) My favorite story is the Sixty-Five Roses story. A little boy with cystic fibrosis (who had two brothers with cystic fibrosis) told his mom that he knew what she was fighting for. His mom Mary Weiss was a major fundraiser and advocate for CF. He said you’re fighting for Sixty-Five Roses because he could not pronounce cystic fibrosis. The story is part of CF lore and how millions of dollars have been raised since.
1) People with cystic fibrosis are advised not to be within six feet of anyone who is sick and also anyone with the same condition due to the risk of bacterial cross contamination with the fear that certain bacteria that can be contracted by CF patients can slowly destroy the lungs. The six-foot-rule came about because germs from coughing and sneezing can be contracted from one person to another person of up to six feet apart.
I hope that this was valuable information.
Live your dreams and love your life.
Andy Lipman… CF warrior for 50 years and counting…
#cysticfibrosis #chronicdisease #cf #sixtyfiveroses