What is Cystic Fibrosis (Cf)

Cystic Fibrosis is a genetic disease (which means that we inherit the genes from your parents.) It causes thick, sticky mucus to build up in our organs mostly affecting the lungs and pancreas. This can result in lung infections which can result in hospital stays. Also pancreatic insufficiency, which is when the pancreas is unable to digest food properly due to the lack of digestive enzymes. People with Cf that have this issue have to take enzymes before we eat instead of our body producing it. This also causes weight gain problems so some people with Cf have to get something called a G-Tube that helps them gain the weight.

Some people with Cystic fibrosis also get CFRD or Cystic Fibrosis Related Diabetes. In people with CF, the thick, sticky mucus causes scarring of the pancreas. This scarring prevents the pancreas from producing normal amounts of insulin, so, like people with type 1 diabetes, they become insulin deficient. Their pancreas still makes some insulin, but not enough to stay healthy and maintain good nutrition. Additionally, people with CFRD may not respond to insulin in the right way like people with type 2 diabetes, especially when sick, when taking steroid medication. This is referred to as being “insulin resistant.” Starting at the age of 10 kids with Cf have to start getting tested for CFRD which is where we get blood drawn and then drink this sugary drink and wait a little and get blood drawn again. This is to see how the sugar effects our blood sugar.

Cystic Fibrosis is often refereed to as 65 roses because of a little boy who overheard his mom talking about it on the phone and thought she said 65 Roses. Often little kids who can’t pronounce Cystic Fibrosis call it 65 roses or Cf. When me and my sister were little we couldn’t pronounce it but we just called it Cf because it was shorter and easier.

Every 3 months or so we have to go to our hospital for a checkup with our Cf doctor to see how were doing. We get something called a PFT or pulmonary Function Test done, which is to see how our lungs are doing and if we need antibiotics. We also talk to other people that work at the clinic to see if we need to go up on enzymes or given any new medication. Once a year we have to get chest x-rays and blood draw. Other than testing for CFRD we have to get blood draw to see if our vitamin levels are good or if we need to go up on one since our body doesn’t absorb/produce it.

Everyone with Cf is different, some people are healthy most of the time or some people can be in the hospital a lot. One problem with Cf is something called cross contamination which is why we can’t be any closer than 6 feet from someone else that has Cf. This is because we can pass germs to each other that wouldn’t be harmful to people that don’t have Cf, but would be to people that do.

People with cf have to do airway clearances / therapy to clear the mucus in our lungs so that we don’t get infections. This consist of two different kinds of medicine that we put in a nebulizer to breathe in and a vest that shakes on our chest. Sometimes this doesn’t stop infection. People with Cf also can have hard times breathing. This really depends on the person though and if there sick.

Another thing that can happen in people with Cf is sinus issues. The mucus can clog in our sinuses and cause sinus infections and can sometimes lead to needing sinus surgery.

Sorry this was such a long post but this is what Cystic Fibrosis is. Thanks for reading.Bye!

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