Cystic Fibrosis News Today Weekly Forum Digest

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Study: IL-1 Receptor Inhibition May Block Mucus Build-up in Early CF

Oct 07, 2019 04:41 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read more about a study suggesting that IL-1 receptor inhibition is a potential strategy to block mucus build-up in early CF.
What do you think of this research?

Nurse appreciation

Oct 06, 2019 04:04 pm | Jenny Livingston

Replies: 0
I was scrolling Facebook the other night and saw a post that said, “If you’re a nurse, somewhere there is a patient who holds you in their memory forever because you were kind.”
I immediately got a bit emotional as I was flooded with memories of nurses who have been kind to me throughout the years. The nurse who brought me handwritten notes each morning with my pills. The nurse who listened to my concerns, even after a doctor had been dismissive of them, and pushed for answers when I was having an allergic reaction to a drug. The nurse who helped me wrap my swollen chest when I was unexpectedly hospitalized and separated from my breastfeeding infant (which is a pain that only women who have breastfed can understand). The nurses who have helped me to and from the bathroom when I’ve been too weak to make it across my hospital room unassisted. The nurse who looked into my eyes, held my hand, and assured me that everything would be okay when I was undergoing a painful and traumatic procedure.
As a cystic fibrosis patient, I’ve had my fair share of hospital stays, and they don’t necessarily get easier with time. In fact, in many ways, they only get more difficult. The people who care for me can (and continually do) make such a difference! My life has been touched by countless nurses who have gone above and beyond their job calling, and I am eternally grateful to them for that.
Who do you hold in your memory? Have you had similar experiences with nurses? I want to hear about it!

Sharing My Journey Online Should Be About Connection, Not Competition

Oct 04, 2019 03:04 am | Cystic Fibrosis News Moderator

Replies: 0
Bailey Anne Vincent discusses online sharing of chronic illness experiences and how the practice should bring people together, not divide them. Click here to read more from Bailey.
How open are you about your experience with chronic illness? Do you use social media much to share your story?

Hexoskin Shirt Can Accurately Assess Lung Function, May Be Tool in CF, Study Shows

Oct 04, 2019 03:03 am | Cystic Fibrosis News Moderator

Replies: 0
The Hexoskin smart shirt can accurately assess lung function and may be a monitoring tool for people with COPD and cystic fibrosis, a study shows. Click here to read more about it.
What do you think of this news?

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

Oct 04, 2019 03:02 am | Cystic Fibrosis News Moderator

Replies: 0
The 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit is set for Oct. 21-22 in Washington, D.C., with the theme “The Time is Now.” Read more about it here.
What do you think of this news?

Managing CF while going to College

Oct 03, 2019 04:19 pm | Jenny Livingston

Replies: 0

I graduated with a Bachelor’s degree earlier this year: one of my proudest accomplishments to date. During my time in college, I was frequently asked how I was able to simultaneously juggle the demands of schooling and cystic fibrosis.
Frankly, it wasn’t easy. There were times, especially during my first year, when I really struggled to keep up with my work. But as I pushed through and gained experience, I found a few things that were really helpful in my journey. I wrote about those tips in a blog post as I was nearing the end of my college adventure, and I wanted to share that with you.
Check it out! Managing CF while going to college
Do you have any additional tips? How did CF affect your college experience?