Cystic fibrosis is a life-limiting genetic disease that primarily affects children and young adults. It is passed by parents who are both carriers of the defective CF gene to their children. As scientists and medical experts continue to look for possible cures for the disorder, let us look at some enlightening cystic fibrosis facts.

1. The Journey (Band) Flew to Ohio to Meet a Fan Suffering from Cystic Fibrosis

The Journey is an American rock band formed in 1973. When its members released their hit single “Only The Young,” its first listener was Kenny Sykaluk, a cystic fibrosis patient in Ohio. After hearing about it, they visited the young fan and sang together. Unfortunately, the 16-year-old patient died the next day, holding a Walkman with the song.

2. Its Hallmark Feature is the Accumulation of Thick Mucus in Various Organs

Even though it predominantly affects the lungs, cystic fibrosis can also attack the intestines, liver, kidney, and pancreas. It is characterized by mucus buildup in the lungs that clogs the airways, making it difficult for the patient to breathe.

3. The Mucus of People with Cystic Fibrosis Smells like Grapes

Patients suffering from cystic fibrosis have mucus filled with the Pseudomonas aeruginosa bacteria. One common characteristic of the bacteria is that it smells like grapes.

4. There Is No Known Cystic Fibrosis Cure

To date, there is no known cystic fibrosis cure. Instead, doctors treat the affected areas, such as the lungs, with antibiotics, often administered intravenously, by mouth, or inhalation.

5. Patients with Cystic Fibrosis Can Be Dangerous to Each Other

While cystic fibrosis is strictly hereditary, patients suffering from the disease pose tremendous cross-infection risks to each other. The thing is, people with the disorder grow bugs in their lungs that can be transmitted to others with the same condition; they can be very harmful.

6. Anton Yelchin Was Battling Cystic Fibrosis Well, Only to Die from a Freak Accident

Anton Yelchin was an American actor known for his role in Star Trek as Pavel Chekov. He battled cystic fibrosis throughout his life (revealed posthumously), only to die from a freak accident in 2016. To put this into context, freak accidents include chainsaw accidents, crowd disasters, hot air balloon accidents, etc. They are highly unlikely, just like cystic fibrosis.

7. Children Commonly Call it 65 Roses

Because the name cystic fibrosis can be too much for kids, they usually use the phrase “65 Roses to refer to the disease. The name originated from an observant 4-year-old boy who, upon hearing the disorder he had been diagnosed with for the first time, mispronounced it as “65 Roses.”

8. Some Medical Experts Believe Frederic Chopin Died of Cystic Fibrosis

Frederic Chopin was a Polish pianist and composer who rose to fame because of his outstanding work. Unfortunately, his life was cut short at the age of 39 in 1849, with the official health records showing that he died of tuberculosis of the lungs and larynx. However, the autopsy didn’t confirm this, so it was stated that the disease that killed him was unknown to contemporary medicine.

Fast forward to the modern day where the medical field has made huge steps, most medical experts believe he died from cystic fibrosis. His symptoms before passing away included lifelong lung infections, persistent fatigue, chronic cough, an enlarged heart, and infertility.

9. Lung Complications Are the Major Contributors of Cystic Fibrosis Deaths

Due to the nature of the disease, about 80% of cystic fibrosis patients succumb to lung problems. Excess mucus usually leads to blocked airways that cause inflammation. If left unsolved, lung diseases result, causing chronic breathing difficulties.

10. There is a Legend of Cystic Fibrosis

Even though people were unaware of cystic fibrosis until the 20th century, there was a folklore legend from the Middle Ages that is thought to have alluded to the disease. It said that if a child had a salty forehead, they were cursed and would eventually die. Interestingly, one of the symptoms that most cystic fibrosis children exhibit is a salty forehead from sweat.

11. Cystic Fibrosis Symptoms Aren’t the Same for Everyone

Cystic fibrosis primarily affects children and young adults. However, they do not always react the same way; some need immediate medical intervention at birth, while others develop complications later. Also, even though difficulty in breathing is the most common symptom, others may include sinuses, digestion tract issues, and problems with the reproductive system. As such, patients might need to see different specialists to manage their conditions.

12. Cystic Fibrosis Causes Infertility in Both Men and Women

According to the results of extensive research, about 97% of men suffering from cystic fibrosis are infertile but not sterile. The patients congenitally lack the vas deferens, the path that connects the penis’ ejaculatory ducts to the testes. Other factors that may contribute to this include abnormally shaped sperms, poor motility sperms, or no sperms at all.

On the other hand, only about 20% of women with cystic fibrosis are infertile. This is primarily due to malnutrition, which can inhibit ovulation, leading to a lack of menstruation or thickened cervical mucus.

13. Dorothy Hansine Andersen Was the First to Publish about Cystic Fibrosis

Even though medical experts believe cystic fibrosis must have appeared as early as 3,000 BC, Dorothy Andersen, an American pathologist and pediatrician, first wrote about the genetic disease. In 1938, she published an article titled “Cystic Fibrosis of the Pancreas and Its Relation to Celiac Disease: a Clinical and Pathological Study.” She was the first person to accurately describe how the disease affects the pancreas and lungs.

14. Many Cystic Fibrosis Gene Carriers Are Unaware They Are

Studies show that 1 in every 20 Americans is a carrier of the cystic fibrosis gene. This translates to over 12 million people, most of whom are unaware that they are unaffected careers. Medical experts, therefore, advise couples who intend to get children together to go for relevant tests before doing so.

15. A Cystic Fibrosis Gene Carrier Is Resistant to Cholera

Based on conclusive studies, an individual who is a cystic fibrosis gene carrier can be highly resistant to cholera. This also explains why the CF gene can survive in the gene pool regardless of its adverse effects. By the way, cholera was a deadly disease before the development of modern medicine – it still is.

16. It Is Most Common Among Caucasians

While cystic fibrosis can affect anyone from any region in the world, studies show that it is mostly prevalent in Caucasians. Given that race and genetics are the disease’s major risk factors, Johns Hopkins estimates that 1 in every 29 Caucasians carries the faulty CF gene. They are followed by Hispanics, African Americans, and Asians. Note that these stats mean nothing unless both parents are carriers.

17. Cystic Fibrosis Is Also Known as Mucoviscidosis

Popularly known as cystic fibrosis and abbreviated CF, the disease is sometimes called mucoviscidosis. It combines the two Latin words “mucus” and “viscidus,” which loosely translates to “viscous mucus.”

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Last Update: December 16, 2023