Tagged: adults with, cf community, Woman crush Wednesday
- This topic has 1 reply, 1 voice, and was last updated 3 years, 2 months ago by William.
November 27, 2019 at 3:32 pm #14108Jenny LivingstonParticipant
Hey CF fam! This week we have Genesis as our WCW. @lxvandme is 20 years old and is from Florida! Here are three things she wants you to know about her life with CF. Answer her question in the comments below!
❤ The medical system has failed me for 18 years of my life. Every time I was advocated for, it was dismissed because my team of doctors that continuously said that because I was born at 24 weeks, it was common to see “asthma” and weak immune systems. So, for 18 years of my life I was labeled with “severe persistent refractory asthma characterized by mucus hypersecretion.” I wasn’t mad when that got shortened down to cystic fibrosis because all of that was getting really annoying to say.
❤ As I grew up , I was active despite the repeated infections and admissions. The effects of having sucky lungs did make being active difficult, but I excelled in almost every sport I played. When I got diagnosed, I was already in a hard place. One year later, it’s only gotten worse. ABPA or allergic bronchopulmonary aspergillosis paired with b. cepacia has taken my lung function down into a place we never expected. Mentally this hit me so hard because I went from playing hours and hours of volleyball daily to barely being able to walk long distances.
❤ As soon as Trikafta was released, my CF team and I automatically knew I needed to get on this drug. While insurance issues are making Trikafta harder to get, my team has been cautiously optimistic after seeing patients needing to stop the drug and that was devastating. When people are diagnosed later in life, there is a misconception that a late diagnosis equals milder disease and they couldn’t be more incorrect. With two serious bugs growing in my lungs, my disease far from mild and at this point treatment options are slim. I’m not sure what’ll happen next so I’m just living life and taking the ride.
What are some myths or misconceptions that you’ve heard about cystic fibrosis?
January 21, 2020 at 6:16 pm #14424WilliamParticipant
The biggest myth for me is that CF is a boring disease.
I taught high school science and biology for seven years and I was spouting nonsense on the topic every year…
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