Cystic Fibrosis News Today Weekly Forum Digest

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Story Share: Who Is Your Best Friend With CF?

Dec 11, 2019 09:20 am | Bailey Vincent

Replies: 0
QUESTION: Tell us about the best friend you’ve ever had with CF
I posted a new column this week and it has to do with the pros and cons of connecting with those in the CF community. It even has to do with serving as a bridesmaid for a friend with CF, some years back!
Although I’ve been fortunate to have many friends with CF over the years, my friend Zachary made a lasting impact. I met him because we bonded online about art (namely Frida Kahlo) and it spiraled from there in the best way possible. When Zach was near the end of his life, my eldest daughter had to call my best hearing-girl friend (because of my hearing loss, I can’t use the phone) and tell her that Uncle Zach was dying and to “come fast”. My best girl friend rushed to us, and we all sat in a parked car (while she interpreted for me) and said our final words to Zach, who was intubated at the time, but could hear our voices.
I got a tattoo for Zachary some years later. A boomerang since he always bounced back. Since then, we’ve created a sister company to my professional dance company- Company 360- called ComeBacks (what goes around comes back around… just like a boomerang!) My best friend- the one who helped interpret as Zach passed away- co-directs the company with me, and the goal is to be an inclusive dance company for those dealing with unpredictability of chronic illness. Our logo, fittingly, involves a boomerang.
Please share YOUR friend stories below so we can continue the love and legacies!

Insomnia and cystic fibrosis

Dec 11, 2019 04:19 am | Jenny Livingston

Replies: 0
Last night, as I was lying awake in bed, I began thinking back and trying to pinpoint when this started happening. How long have I struggled with insomnia?
I can remember being a child, quietly playing with my stuffed animals in the early morning hours because I’d woken up and couldn’t fall back to sleep. In high school, I’d watch the minutes and hours tick by on the clock thinking “If I fall asleep now, I’ll get six hours of sleep. Okay, if I fall asleep now, I’ll get five hours of sleep.”
The conclusion? I’ve always dealt with some degree of insomnia. So much that I’ve never even considered it abnormal, it’s just what I’m used to.
Researchers have examined the link between CF and sleep disorders. One study found that even stable patients experience sleep disruptions, and sleep disruption may in part be related to the severity of lung disease. Another study suggests that the master circadian clock is affected by CF, and sleep phase delay is a primary manifestation of CFTR dysfunction in the CNS (central nervous system).
Do you struggle with insomnia or other sleep issues? Have you found ways to combat insomnia and get better sleep? Or have you found things that affect your sleep negatively? (stress, CF exacerbation, etc.)

References:
Jankelowitz, L., Reid, K. J., Wolfe, L., Cullina, J., Zee, P. C., & Jain, M. (2005). Cystic fibrosis patients have poor sleep quality despite normal sleep latency and efficiency. Chest, 127(5), 1593-1599.Jensen, J. L., Jones, C. R., Kartsonaki, C., Packer, K. A., Adler, F. R., & Liou, T. G. (2017). Sleep Phase Delay in Cystic Fibrosis: A Potential New Manifestation of Cystic Fibrosis Transmembrane Regulator Dysfunction. Chest, 152(2), 386–393. doi:10.1016/j.chest.2017.03.057

CF Antibiotic Response May Be Predicted by IGF2R Levels, Study Says

Dec 11, 2019 03:36 am | Cystic Fibrosis News Moderator

Replies: 0
IGF2R may help predict treatment response in cystic fibrosis patients who receive intravenous antibiotics for pulmonary exacerbations, a study says. Read more about it here.
What do you think of this news?

“Does Educating Others About Your Disease Feel Like a Blessing or a Curse?”

Dec 10, 2019 03:26 pm | Bailey Vincent

Replies: 1
QUESTION: Does educating others about CF feel like a blessing or a curse?
I posted on my Instagram about fighting for accommodations as a Deaf person and the many ways in which I fail. Often, I’m tired of having to “fight the good fight” to get others to understand needs outside their own, and wish I could retract entirely. This is of course not how we create change in the world…. But it sure would be easier!
Have you had to advocate for yourself this week? Do you resent it or rise to the occasion?
There are no wrong answers!