Healthy Living

Vlogger with Cystic Fibrosis Tells It Like It Is

Young Man with Cystic Fibrosis Avoids Meeting Others Who Have It, Too

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Charles Michael Duke is a 22-year-old video blogger who blogs on YouTube about living with cystic fibrosis. He's always singing or joking about his life, and posts comedic videos about his experience living with cystic fibrosis.

A talented musician and actor, Charles has even created his own song title "I've got Cystic Fibrosis". In a sultry tenor voice, he serenades the public on his guitar about the woes of living with cystic fibrosis. In his song lyrics, he addresses some of the differences that the disease has wrought on his body, including the pancreatic enzymes he lacks that contribute to the uncomfortable bathroom issues that many patients suffer.

Using comedy and song to teach others

Charles shares in an interview with BBC that he had always been writing and singing funny songs about silly things in his life. One day, he just sat down in his room and started to write and sing about his Cystic Fibrosis. He began to film the song because he was inspired to share with his friends that he was living with this disease and what it was like. After posting it online, what was meant for only friends ended up reaching a much wider audience and his video-logging took off from there.

"I think the idea was that everybody likes listening to a song rather than somebody sit there and blurt out sort of some Wikipedia entry," said the Southhampton-based actor

Charles realized that he could use humor and song to help educate others about his condition. Though the song was meant to be light-hearted and funny, Charles had touched on many of the realities that a person with cystic fibrosis lives with every day.

"Everybody has phlegm"

Charles has much to teach the public about cystic fibrosis. When talking about how it affects his life, he educates people about phlegm. For healthy people, phlegm is helpful to trap bacteria so you can cough up the germs appropriately and keep them from causing infection. However, people living with cystic fibrosis often have thick and sticky phlegm due to a higher salt content in their bodies trapping the water. Thus, rather than helping cystic fibrosis sufferers to prevent bacteria from infecting the lungs, the sticky phlegm cannot be easily coughed out and traps bacteria inside the lung. The warm, moist lung then makes a perfect environment for germs to grow and infect people living with cystic fibrosis, slowly destroying the natural architecture of this organ responsible for every living breath.

Charles isn't afraid to talk about some embarrassing aspects of his disease

He also shares about the smelliness he endures from the bloating and gas that Cystic Fibrosis patients suffer. Often, this is a sensitive and embarrassing topic for most, but Charles head-on addresses the issue to explain to people why people with this condition suffer from such a symptom. Cystic Fibrosis patients can't secrete functioning pancreatic enzymes, and thus a lot of the nutrients that are eaten cannot be digested and absorbed properly. This includes some of the fatty content of various meals, which then travel to the colon to feed some of the bacteria that are harboring there. The bacteria then feed on this food that is passing straight through the patient's bowel and produces CO2 gas. This gas is what causes the foul odor and flatulence that many cystic fibrosis patients experience.

"I have E.T. fingers"

Charles also sings about having "E.T." fingers. He explains that this phenomenon is tied to lung dysfunction resulting in low oxygen delivery to the bloodstream. Doctors refer to this as clubbing, and it may sometimes make patients young and old feel self-conscious about being different.

In his interview, Charles also talks about having to stay away from other patients with Cystic Fibrosis. Unfortunately, people who live with this disease are often hosts of various organisms and bugs that can be spread to other cystic fibrosis patients. On top of that, there is a high risk that someone living with the disease may have multi-drug resistant organisms, or "Super Bugs", that are robust against typical antibiotics used today. If people who have cystic fibrosis meet in real life, they risk giving each other these various bugs and making each other extremely sick. Because of this, Charles often hangs out with other friends with cystic fibrosis via the web only.

Charles is able to communicate with others living with CF

In his video blogging, Charles talks about some things that only other patients can appreciate. Most commonly, he can talk about the bacteria that plague his lungs from time to time. Big words like staphylococcus and Pseudomonas are overwhelming for the average person but anyone with cystic fibrosis would be familiar with these terms. It's kind of nice that Charles can talk to his people and share with his Cystic Fibrosis about things that only they would understand.

Charles’s Buttons

Charles has got a feeding tube that he's named "Buttons". Luckily, "Buttons" is a very low-profile tube that feeds directly into this stomach. All he has to do is attach another tube providing the extra calories that he needs to "Buttons" and he's ready to go. The device itself is actually called a button but he named it this because "Buttons" was also his first pantomime role in Cinderella. He refers to his "Buttons" as a separate person a lot of the time, for example, on New Year he told friends "Happy New Year from me and Buttons". He feels that this naming and personification of the medical tube helps him get more comfortable with it, and also makes others more comfortable about asking about what it is. Luckily, he doesn't need to use "Buttons" too often as he is currently able to get enough calories through his diet.

Charles shares the difficulty of getting treatment for his chronic condition

Every day, Charles has to use a breathing treatment with a machine that blows in the air into his lungs. This helps him expand his lungs and also propel any sticky phlegm out from deep within. Sometimes, when he's in the hospital, Charles also will get physiotherapy, which is when a vigorous machine will bash him on the back to try to loosen up the mucus within his lungs so it can be coughed up. Charles laughs about how he always was a troublemaker with his treatments, waiting until after bedtime before starting the treatments so he can leverage with his parents about staying up late.

When he was a teenager, Charles said that he went through a little rebellious phase. The hardest part about sticking with his treatments was simply the desire to do other things, like most teenagers. It's hard to motivate yourself to go home and do breathing exercises when you're out with friends or enjoying your hobbies. Going home to pick up the machine or medications was the last thing on a teenage boy's mind. As a young boy, Charles says its especially hard because you only understand what the illness is but not the consequences of not doing the treatments.

Charles is currently waiting for a double lung transplant. He explains that those listed for transplant are often in danger of falling extremely ill, to the point that they cannot get the transplant after all. He was able to get on the list the first time he applied, and he was told that he immediately qualified and could expect to wait 9 months. It's been two and a half years and he has been working very hard to stay healthy enough for the surgery.

At the young age of 22, this charming actor shares some wisdom. Charles has been extremely patient about the whole ordeal and shares with BBC that he has come to terms with living a possibly shorter life than everyone else. He feels that it's not about the number of days you live, but rather what you do with them. He tries his best to always live his life to the fullest and do the most he can with the days he is blessed with.