Cystic fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. For more info check out the projects in the project section! Don't add projects unrelated to CF.
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CF Carriers: (Have the gene for CF, but not CF. Possibly carries some of the symptoms, and if they have children with another CF carrier, there is a 25% chance their children will have CF)
Tell us other Scratchers with CF in the comments!
Howl's Daily Routine with CF: (When she had school)
Wake up at 5:30 AM to do vest treatment and nebulizers. She does 30 mins of vest; which shake her to loosen mucus in her lungs so she can cough it up. The nebulizers help weaken the mucus.
She takes her 14 morning pills: 6 of them are called Enzymes, which help her digest food as she cannot do it alone. Then eats breakfast.
She goes to school, and right before lunch she leaves class to go to the nurses office, where she takes six more enzymes.
When she gets home, she takes five enzymes so she can eat a snack. Then she goes and does her vest and another nebulizer for another 30 minutes. After she is done with that, she does something called a Netty Pot Treatment, where she squirts water up her nose and it comes out the other side, so her nose isn't as stuffy.
She has a bit of free time, then right before dinner she takes six MORE enzymes, and after dinner she takes her other two pills.
Then she goes to bed.
All together, that is two vest treatments, 30 minutes each, three nebulizers, 10 minutes each, one Netty Pot Treatment, and 33 pills. In ONE DAY.
Another part of Howl's life is frequent doctors appointments. She goes to a doctor once every three months (If she is not sick) and each time she drives four hours, she's there for three hours, in which she undergoes blood tests, pulmonology tests, etc., goes out to eat, and drives four hours home.
Scarlet's Daily CF routine:
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When Scarlet wakes up, she does an afflo vest: which loosens the mucus in her lungs) During the afflo vest, she also does nebulizers to help her sinuses and lungs. After 30 minutes of those, she does an inhaler. Afterward she sets up a shake she gets through her G-tube (G-tubes aren't needed for all CFer's) The shake goes through her G-tube in her stomach, and goes straight to her stomach. Scarlet doesn't get enough food by mouth: so she has to use the G-tube. She also takes enzymes, the enzymes are needed for anything with fat in it. It helps her digest her food. She also takes a 2 pills called Orkambi. After that, she does a nasal rinse. It's a bottle that squirts salty water in her nose to clear her sinuses. After the nasal rinse, Scarlet has to take a few pills and then do some nasal sprays. After that she has a bunch of free time to relax. But at lunch, she has to repeat the G-tube process and take some more pills. After lunch Scarlet has more free time. But at dinner, she repeats the G-tube process once again and takes more pills. Then she has a bit of free time. But before bed, she has to do another afflo vest and more nebulizers. After those are done. She uses an inhaler and goes to do another nasal rinse and nasal sprays. Finally, she takes 3 more pills and then heads of to bed.
When Scarlet is sick. She has to do more than 2 afflo vests and she does multiple nasal rinses.
Scarlet also has frequent doctor's visits even when she isn't sick. She has them every three months. Also, every three months, she gets her G-tube changed so it doesn't get dirty. Changing the G-tube is very painful. Also, Scarlet has had more hospital stays than some people have in a life time.
MOVIES & BOOKS WITH CF:
-Five Feet Apart- Movie and book
-Caleb and Kit- Book
Anything else we should add? Tell us in the comments!