On Cystic Fibrosis Awareness

On Cystic Fibrosis Awareness

Cystic fibrosis (CF) is an inherited disease that affects salt and water movement in the body and makes it harder for them to go in and out of cells. It primarily affects the lungs and digestive system as it makes the mucus, sweat, and digestive juices in the body sticky and thick.

Effects of Cystic Fibrosis

If CF affects the lungs, the mucus causes airways to get clogged and this traps germs; leading to infections, inflammation, respiratory failure, and other complications. But the organs affected by CF are not limited to the lungs. Pancreas, liver, intestines, reproductive system, and other organs in the body can also be affected. 

CF can be seen in everyone regardless of race, age, gender, etc. There are more than 70,000 CF patients worldwide, and 1000 new cases are diagnosed each year. This makes building a general cystic fibrosis awareness really important. 

Cystic Fibrosis Awareness

As mentioned in a research paper published in the European Respiratory Society Journal, a pragmatic survey that was done in Italy shows that public cystic fibrosis awareness is poor. The survey was conducted with a sample of 1006 Italians interviewed online in their homes but did not yield very positive results. For example, only 64% said they heard about CF previously and only 20% knew that it was a hereditary disease

Cystic fibrosis awareness is crucial because it is the only way to ensure that patients recognize the symptoms and take action to search for a diagnosis. Not only that, but it also makes it easier to know what to expect for them. This ensures that steps can be taken to manage the disease.

The Effects of Cystic Fibrosis Awareness on Disease Management 

As the effects of the disease become more widely known, the solutions for management increase as well. For example, CF patients may need inhaled medicines to help loosen and clear out the mucus build-up in their lungs. This means that their lung capacity needs to be closely monitored, but constant trips to the hospital may not be easy or possible at all in the more severe cases.

This makes devices like SpiroHome Personal, which brings clinical accuracy to the patients' homes, crucial to manage the disease and monitor it day-in, day-out. SpiroHome Personal relieves the burden of routine hospital visits to check lung values. While using this personal, hand-held spirometer that is fit for home use, patients can be remotely tracked by their healthcare teams via SpiroCloud and their treatments and management strategies can be altered accordingly.

Mia Gaudenzi

To get a closer look at what this process looks like, you can find our talk with cystic fibrosis patient and SpiroHome Personal user Mia Gaudenzi here.

Sources

  1. What is cystic fibrosis?”, Cystic Fibrosis Trust. 
  2. About cystic fibrosis”, Cystic Fibrosis Foundation. 
  3. "Public awareness on cystic fibrosis: results from a national pragmatic survey", European Respiratory Society Journal, 2015.
  4. "Cystic Fibrosis by the Numbers: Facts, Statistics, and You", Healthline, 2020. 

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