Cystic Fibrosis is a very rare disease only affecting about 30,000 people in the US and 70,000 people worldwide. Here are seven things you may not know about the disease:
Seven Facts About CF You May Not Know
1. People with CF are advised not to get within six feet of each other. Many of you may have seen the movie “Five Feet Apart,” about two CF patients advised not to get within six feet of each other. You’ll understand the title by reading the book or seeing the movie. This is because of the risk of bacterial cross-contamination in which certain bacteria (burkholderia cepacia) that only two patients with CF can give to each other. For a normal person, this bacterium is not a concern. For a CF patient, it’s devastating to the lungs.
2. CF is not just a lung disease. A lot of people think CF is like asthma. This drives CF patients crazy. CF affects more than the lungs. It affects the reproductive system, the sinuses, the kidneys, the liver, the digestive system, and overall bone density. We are also at risk for certain bowel and duct cancers. In fact, Cystic fibrosis is considered a Mendelian disorder — a genetic disorder caused by the mutation of a single point in a gene. “Cystic” means something characterized by “cysts.” “Fibrosis” is the scarring of connective tissue. Despite commonly being called a “lung disease,” “cystic fibrosis” refers to the cysts and scarring on a CF patient’s pancreas.
3. People with CF who have successful double-lung transplants are not cured of cystic fibrosis. There are still problems because of the effect of CF on the overall body, and transplant rejection also becomes a factor.
4. CF is the leading genetic killer in the United States.
5. Everyone with CF is different. Many of us have different gene mutations or issues with our CF. Some people are not pancreatic deficient. Others have lungs problems that are worse. There are over 1,700 gene mutations for CF patients. Read more stories of CF Warriors in my book!
6. CF is primarily found in Caucasians and is only found in one in 17,000 African Americans, and one in 31,000 Asian Americans.
7. Before newborn screening that helped diagnose most patients prior to age two, it was actually relatively common for people with CF to get diagnosed later in life and even in adulthood. This doesn’t mean someone caught cystic fibrosis. They had it their whole life. Some people are just misdiagnosed or have lesser symptoms that get worse with age. This late diagnosis is more common in females.
What’s something unique about cystic fibrosis in your opinion?
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Andy