Emily of Emily’s Entourage shares interesting tidbits and lesser-known facts about life with Cystic Fibrosis (CF).
1. People with CF can’t be together.
The thick, sticky mucus that builds up in our lungs functions like silly puddy. So, when bacteria enter our lungs, they tend to stick around forever whereas healthy people’s immune systems can fight them away. As a result, people with CF harbor dangerous bacteria in their lungs and these bacteria are contagious only to other people with CF or compromised immune systems.
The good news is CF is not at all contagious or dangerous to healthy people. The bad news is the cross infection risks mean people with CF are advised not to be within 6 feet of one another.
In response, we’ve formed thriving online communities so that we can benefit from information sharing and support, but there’s no denying that virtual connections can never replace in person ones. For me, this is one of the hardest things about CF.
2. CF and Tay Sachs are tied as the most fatal Jewish genetic diseases.
When you think fatal Jewish genetic disease, you think “Tay Sachs,” right? But the truth is that approximately one in 25 to 27 Ashkenazi Jews is a carrier of CF, making it just as prevalent as Tay Sachs. That’s why Emily’s Entourage is on a mission to get the word out to the Jewish community that CF is their disease, too.
3. Our skin is super salty.
Back in the day, salty skin was the hallmark characteristic of CF. The reason is that a faulty salt chloride channel causes people with CF excrete too much salt. In other words, when we sweat, we lose too much salt, which puts us at increased risk of dehydration.
If it’s hot outside and you lick the skin of someone with CF (with permission, of course!), you’ll taste how salty they are! You may even see salt crystalize on their skin.
To this day, the diagnostic test for CF is called a “sweat test” because it measures the salt chloride levels in your sweat.
4. We are master deceptors.
CF is an invisible disease, which means that, as sick as our lungs and other organs are on the inside, you can’t tell from the outside. Just from looking at me, you’d probably never guess that I have less than a third of the average lung function or that I’m teetering on the brink of lung transplant evaluation.
This is a blessing and a curse. The downside is that it is often hard to appreciate how sick we feel and how difficult everyday tasks are because we look so deceivingly healthy on the outside. But on the flip side, it’s nice not to wear our disease on our sleeve, so to speak, so people see more than just our disease when they look at us. Plus, looking healthy rather than sickly is generally a good thing.
5. The nickname for CF is 65 roses.
Way back when, children with CF had trouble pronouncing “Cystic Fibrosis.” So, they came up with a nickname with a similar ring: sixty-five roses. Roses certainly evoke a much more lovely image than a life-threatening disease. In fact, the nickname stuck so much that it is still used today and roses have become an unofficial symbol of CF.
Have questions about these facts or CF in general? Leave them in the comments section below. No question is too simple or silly and we’re happy to answer anything!