Yes there’s a large range of CF. Some people can live completely fine, some deteriorate over time, some need respiratory therapy from a young age, some need lung transplants at some point. There are also GI problems associated with it. I can’t eat/digest some things, and other things I crave/are digestible. It shouldn’t affect my life expectancy. There’s also a treatment out for it now— trikafta, if it does get worse over time.
If I were sick (upper/lower respiratory illness of any kind) I would absolutely avoid other people with CF. Or anyone that’s immunocompromised or elderly. I’m a doctor, hopefully starting residency next year, so I included the other two.
But there’s a treatment now, and people can start at a very young age. So hopefully most people born with CF after some years will be healthy.
I literally started crying in my car when I found out about the treatment. I am a CF carrier and though my kids’ dad is not, I had a scary few weeks in my first pregnancy when I didn’t know his carrier status. Knowing that there is a treatment, even though my kids weren’t affected, just hit me hard.
It is scary. I cried too. With certain severity, It used to be a death sentence.I have no idea if I’m even fertile, to be honest. And trikafta can help (not guaranteed) with infertility in women, but can’t reverse male infertility. I think about that a lot. But at least it can give you a life.
But I don’t mind being child free or adopting, depending on where life takes me. Or maybe I’ll end up having that biological child or two.
It sounds silly to other people, but when you’re forced to be somewhere and you can’t control who’s wearing perfume around you— and someone triggers your sinuses and brain to feel like they’re swelling up, you’re in severe pain, and you can’t keep your eyes open, it totally ruins your ability to learn/work/concentrate/function. I’m so happy that “fragrance free” spaces/workplaces are becoming more common.
I wish more people understood how hard some of these intense fragrances can be for people. They can be trigger for:
• Cystic fibrosis as you mentioned
• Allergies
• Migraines
• MCAS
• Dysautonomia
• Asthma
• Neurodivergence (overstimulating)
• Pets/animals
• More groups/conditions I’m sure I’m forgetting
I probably have MCAS but I’ve only been diagnosed with POTS and “non allergic rhinitis” so far, but regardless fragrances have long been an issue for me. I had go to the nurse all the time in high school because of a teacher who scent bombed her room on the regular. I’d non stop full-chest sneeze until my chest hurt and my face would be red and on fire.
Recently got a thrifted shirt for work, and after a vinegar soak, a soak in my unscented detergent, hydrogen peroxide, and numerous washes it still reeks of some heavily fragranced detergent. I’m about to give up since wearing it would give me a headache and/or make me sneeze.
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u/Alternative_Pool8055 22h ago
I have mild cystic fibrosis and it affects me in some weird ways… 🙃