At some point in our lives with CF, we rely on our friends, family, and neighbors to help take care of us. They help take us to and from appointments, handle insurance, and provide life-saving care.

My entire life, my mom has been my main and best caregiver. She is understanding, attentive, dedicated, and loving. She makes sure I get the care…

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Since CF is an orphan disease, we haven’t seen a ton of representation in the media, and when we do, the CF experience seems to be tokenized, shortened, and used just to make people sob in theaters. 

I have only seen two acceptable CF characters on television, and that’s on Red Band Society and Bates Motel. In these shows, the…

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I agree, it is a double-edged sword! I have been on it for 10 years straight, and the damage it’s done to my other organs and bones is wild. But I’m grateful for the role it plays in my health care routine. Sounds like you have a similar experience :).

Prednisone is a double edged sword. I’ve had to be on it at various times both for my CF and my rheumatoid arthristis. It makes me feel so much better but the long term effects on the body are nasty. A Rheumatologist told me it ages your organs. At 66 I feel that. Nevertheless I’m taking it right now and I know in the future I will again.

Many of the meds we take to help manage our CF care put us through the wringer. But the heavyweight champ seems to be Prednisone. Prednisone is a steroid used to reduce inflammation and mitigate symptoms, but it also has quite the reputation for moon face, weight gain, shakiness, aggression, mood swings, osteoporosis, and more. Like, need I…

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CF is a complex disease that is scary, lethal, and progressive. It’s also multifaceted because it affects everyone differently. As a cheat sheet, anywhere there is mucus in the body, CF is there, lurking in the shadows while also basking in the sun.

Personally, I wish people understood the constant anxiety I feel being in my own body. I do…

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Self-care can be done in many different ways, especially in the daily life of someone with CF. Whether it’s adhering to our strict medication regimens, watching a comfort show, or exercising, self-care is very important. 

Personally, I enjoy watching true crime documentaries to unwind, doing face masks, and taking all my pills on time. I…

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Making small daily behavioral changes can help you avoid infections while living with CF. Washing your hands for 60 seconds, coughing into your elbow, and wearing a mask in the clinic are behaviors you are familiar with.

My personal hacks include using hand sanitizer after every visit to a store or restaurant. Using an alcohol wipe to wipe…

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People love to use the words “hero” and “warrior” when complimenting those with CF on their triumphs and hardships. However, sometimes the “hero-ification” or applying a superhuman quality to a human can be upsetting.

I personally don’t have a problem with someone complimenting me with those words. But I do get annoyed because I would trade…

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There have been countless studies, such as https://pmc.ncbi.nlm.nih.gov/articles/PMC7590463/, that show there can be benefits to Cannabis use in CF patients. From nausea to anxiety, Cannabis has helped many people, but it isn’t for everyone. 

Personally, as someone with stomach issues, anxiety, and constant nausea, I think cannabis would be…

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CF scars are bodies, in ways we do not consent to. However, a lot of us with CF get disease-related tattoos to show off our prowess and strength.

I have a rose tattoo that I got after my second transplant. It holds such significance to me because I finally got to choose a permanent change to my body. It was like a trauma release. Even though…

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Love this! Thank you for sharing.

As the mom of a daughter with severe cystic fibrosis, this song by a French-Canadian band means so much to me. It was written by one of the band members, who is also the father of a daughter with cystic fibrosis. I took the liberty of translating the lyrics into English 🩷 https://www.youtube.com/watch?v=uWDz5zEc1hs

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Despite the…

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CF is a real medical diagnosis that requires expert care. However, alternative medicine also has some benefits. With Western medicine alone, we often focus on the body rather than the whole person. 

There is never a day I don’t religiously take my pills, do my treatments, and make a doctor appointment. But my hospital also offers…

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CF is an invisible condition, meaning your outward experience does not match how you feel inside. Sometimes it feels like I’m cosplaying a healthy person when I look in the mirror. Dating can be tricky, so if I can get confused, my possible suitor can too. 

 

When I go on a date, depending on how I feel about them and how much I trust them, I…

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CF, despite modulators and other airway clearance methods, still causes infections that can significantly affect our lives, especially when we are in high school and/or college. With frequent hospitalizations, doctor appointments, and feeling bad in general, this leads to a unique and different high school and/or college experience, compared…

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Traveling in general is a headache; traveling with cystic fibrosis can cause a migraine. While others can pack just the essentials, those with CF need their meds, backup meds, a vest, a vest machine, and to know where a CF-proficient hospital is in the area they are going to. It’s very daunting, but it can and is done!

 

As a kid, my mom took…

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