I make a lot of speeches outside of the CF community and when I do, I ask one simple question. "What is cystic fibrosis?" The answer I generally get is "a lung disease." While that's not totally false, it's not completely true either. That's like saying that I am a human being. There is so much more to it.
So without further adieu, here are 25 common misconceptions regarding cystic fibrosis.
25. Cystic fibrosis and depression are mutually exclusive.
False. People with cystic fibrosis and really any sort of chronic disease are at a higher risk for depression. In fact, CF clinics are now screening patients for mental illnesses like depression and anxiety.
24. Cystic fibrosis is just a lung disease.
Somewhat false. It is a lung disease but it also affects a lot of other parts of the body including the sinuses, digestive system, male reproductive system and bone density. It increases risk for certain forms of cancer, male infertility, osteoporosis, liver disease, diabetes (discussed later)and sinusitis. It does not affect one's sense of humor though my family might argue that point.
23. Cystic fibrosis and asthma are the same thing.
False. Want to offend someone with cystic fibrosis? Tell that person that asthma and CF are the same. They're not. First off, CF is much more life-threatening and secondly as already mentioned CF affects more than just the lungs.
22. People with cystic fibrosis meet in person all the time to discuss their disease because CF is not contagious.
Somewhat false. It's recommended that patients remain at least 6 feet apart because of the danger of bacterial cross-contamination. CF patients are NOT contagious to people who DO NOT have the disease but we can pass deadly bacterial infections to each other. It's one of the saddest and most difficult things to understand about CF.
21. CF is contagious because some people get it later.
False. As mentioned earlier, CF is not contagious other than passing bacterial infections from one patient to another. CF is a genetic disease meaning that even if you were diagnosed at 45 years old, you've still had it the whole time. Sometimes people are misdiagnosed or their symptoms were not bad enough to get checked. That's why newborn screening is so important.
20. Cystic fibrosis is difficult but not deadly.
False unfortunately. More than one patient a day dies from CF and more than nine a week. CF patients are also more prone than the average person because of our "crappy" lungs to get lung infections like pneumonia or bronchitis and some patients have even died as a result of these infections. Still the life expectancy was in the teens when I was born and now hovers around 40. In other words, we are making serious progress.
19. Since the median life expectancy is 40, people with CF don't live to 41.
False. In fact, I'm 43. Median life expectancy means pretty much an average. So some patients unfortunately died as children while others have lived into their sixties and seventies. When I was growing up people weren't even living through high school and now some patients have full-time jobs, significant others and even children. As I continue to say, "It's a great time to have cystic fibrosis."
18. 98% of males with cystic fibrosis cannot have children because they are too sick.
False. It's because males with CF including myself do not have a fully formed vas deferens which is the bridge that carries mature semen to the urethra.
17. It's easy to recognize someone with cystic fibrosis.
False. Cystic fibrosis is an invisible disease because it's difficult to tell if someone has it unless you're with them when many of them do their two hour daily treatments/therapies to remove thick mucous and allow airway clearance. It is also difficult to witness them taking their 20 to 30 enzymes each day to help with digestion. Many do both. We are kind of stealth when it comes to taking our meds so if you're not paying attention, you probably won't notice. Sometimes CF can be revealed by seeing a person's IV wires exposed as they need these to receive IV antibiotics or you might see their oxygen tanks which provide assistance to breathe for those whose lung function is severely depleted. CF patients also generally have doctor's appointments every 3 months so if you're a stalker and you follow that person to the doctor at least 4 times a year, that might be an indication that they have CF. Also, if you're a stalker, please get help.
16. Most CF patients are diagnosed because of their cough.
False, CF patients can be diagnosed through blood tests or genetic tests but most commonly are diagnosed with a sweat test that determines how much salt is in their sweat. Sweat tests are generally about 98% accurate.
15. People with CF have a tendency to be licked by dogs because dogs sense that we are great animal lovers.
False. Though I know many of us do love animals like dogs, the truth is that the faulty CFTR or Cystic Fibrosis Transmembrane Reactor will not allow chloride to reenter the cells. Sodium is therefore also blocked since it travels with chloride. In people with CF, salt then travels to the skin's surface with water and is not reabsorbed therefore making our skin really salty and also meaning we can dehydrate very easily. That's why the sweat test is used to diagnose many of us. Animals specifically dogs tend to love the salty taste. If a CF patient allows, you can taste the salt too. If not, you'll have to grab a Margarita.
14. There is no one famous with CF.
False. Occasionally CF can stand for Celebrity Found. Frederic Chopin, the legendary pianist, is rumored to have CF. Other CF celebs include Alice Martineau, a famous singer from the UK, Nathan Charles, a professional rugby player from Australia and Frankie Abernathy, star of MTV's Real World. Many celebrity families have also been struck with CF including NPR's Frank Deford, pro football quarterback Boomer Esiason, pro football quarterback Joe Flacco and legendary singer Celine Dion.
13. CFRD (Cystic Fibrosis Related Diabetes) is the same thing as Type 1 Diabetes.
False. Patients with CFRD typically experience lung function decline, weight loss and an increased rate of death. CFRD does involve severe insulin deficiency but it's not as complete as Type 1 diabetes. CFRD affects 20% of adolescents and 40 to 50% of adults with CF which are much higher percentages than Type 1 diabetes found in people without CF.
12. Everyone's CF symptoms are the same.
False. CF patients are almost always different. Some are pancreatic sufficient and don't need enzymes and some are not which many times is revealed with CFRD mentioned earlier. Some don't experience as many lung issues while others do. With lung issues comes airway clearance like the vest, postural drainage or the acapella. Not only does each of us have different symptoms but we use different meds too. There are different brands of treatments and medications. Very rarely do you find two people with the same routine.
11. Other than airway clearance and taking enzymes, there is no way to improve your health with CF.
False. Studies have shown that better nutrition and more exercise can lead to improvement but obviously airway clearance and/or enzymes should always be the priority.
10. Caucasians are the only people with cystic fibrosis.
False. One in 31 Americans are symptomless carriers of CF. Caucasians are the most common carriers with a 1 in 29 rate. The other carriers include 1 in 46 Hispanic Americans, 1 in 65 African Americans and 1 in 90 Asian-Americans. The number of people who have CF is 1 in 2,500 - 3,500 Caucasian Americans, 1 in 4,000 - 10,000 Hispanic Americans, 1 in 15,000 - 20,000 African-Americans and 1 in 100,000 Asian Americans. 1 in 25 to 27 Ashkenazi (European descent) Jews are also carriers of CF. So while not widely discussed, CF is pretty diverse.
9. The only way to have cystic fibrosis is if at least one of the parents has CF.
False. For a child to have CF, both parents must be CF carriers. Neither has to actually have cystic fibrosis. If both have the gene, there is a one in four chance that the child will have CF, a 2 and 4 chance that the child will be a carrier but not have CF and a 1 in 4 chance that the child will neither be a carrier nor have CF.
8. The U.S. has the highest CF patients per capita.
False. The "winner" is Ireland. While there are about 30,000 people in the US with CF, there are another 40,000 to 50,000 people around the world who fight this disease.
7. Insurance covers all drugs and treatments for cystic fibrosis.
False. Many people wish this was true but because of the cost, things like the vest and breakthrough drugs like Orkambi and Kalydeco are not approved by every insurance company especially in places outside of the United States. Several countries still not approve several drugs/therapy devices because of the cost verses the amount of perceived improvement these methods have on a CF patient's health. We continue to fight though.
6. The term 65 Roses came from the fact that the oldest CF patient was a 65 year old woman named Rose.
False. The term actually came from a kid who was trying to say "cystic fibrosis" to his mom but mispronounced it "sixty-five roses." The name has stuck. Just glad he didn't say 60 live roaches.
5. People with cystic fibrosis experience clubbing which means they get the urge to go out a lot.
False. Not that type of clubbing. Due to lack of oxygen, we experience something called clubbing of the fingers and toes which means the ends get wider and the nails tend to curve downward.
4. Cystic fibrosis is always capitalized.
False. This one is for the grammar police. When writing about cystic fibrosis, make sure not to capitalize it unless you're talking about something like the Cystic Fibrosis Foundation. Diseases like cystic fibrosis, cancer and diabetes are not capitalized. The only diseases that are capitalized are named after people like Lou Gehrig's disease, Lyme Disease or Alzheimer's disease.
3. Being that CF affects only 30,000 people in the US, there are not any foundations around.
False. The Cystic Fibrosis Foundation has approximately 70 chapters around the country. CF is denoted by the purple ribbon and even has its own awareness month. That would be May. One in 31 Americans are symptomless carriers or 10 million people so awareness is definitely needed. In fact, approximately 1,000 new cases of cystic fibrosis are diagnosed annually. Outside the US, there are other big CF organizations including the CF Trust in Europe and Cystic Fibrosis Australia in, well I think you can figure that out.
2. Having a lung transplant cures CF.
False. Sadly there is no cure and since a CF patient's cells still have the disease, having a transplant doesn't remove it. It just alleviates many of the lung problems that a person is having.
1. Approximately 100 genetic mutations of cystic fibrosis are tested when a person is being screened so that's all the mutations there are.
False. There are more than 1,700 cystic fibrosis genetic mutations but the top 100 are the most common and therefore are the ones that are usually screened.
In closing...
So hopefully you know a lot more about cystic fibrosis than you did before you read this post. Cystic fibrosis is quite the puzzle but it's slowly being solved by medical science. Here's to hoping that someday soon the statement "There is no cure for cystic fibrosis" is another misconception about CF.
Live your dreams & love your life.
Andy
