On Thursday, October 20, 2022, Dr. Sigrid Ladores, University of Alabama-Birmingham, and two of her PhD students, Brittany Woods, and Leslie Pitts, discussed wellness and coping in CF by introducing us to hygge. Working directly with a CF patient/advocate, Morgan...
Patient Task Force
Self care is Advocating for Yourself and Listening to Your Body, by Anna Payne
For 34 years, I never really practiced self care. I did my treatments and took my pills, but I never really considered that self care was more than just something I had to do. I constantly put the needs of others above my own. But that all changed in July of 2021,...
New CFReSHC Partnership with CFLF
In 2022, we partnered with the Cystic Fibrosis Lifestyle Foundation (CFLF) and received an Impact Grant from the CF Foundation to provide meetings on sexual and reproductive health issues for those assigned male at birth with CF over the age of 18. We plan to hold...
I’m Not Food Insecure, OH WAIT?!?
I was recently involved in a research study with the University of Alabama-Birmingham that discussed food insecurity and other financial challenges faced by members of the CF community. Going into this study, I truly did not believe I had any food insecurities,...
Psychological and Social Impact of being a Female with CF Living with a Disability – Workshop Sept 13
PTF Meeting Summary: Modulators and Nutrition
On August 5th, 2022, Registered Dietician Julianna Bailey from the University of Alabama-Birmingham School of Medicine, discussed her recent study looking at CFTR Modulators and Nutrition. Read the full summary here.
CFReSHC is on YouTube!
CFReSHC is on YouTube! Click here to see all of the presentation portions of our previous Patient Task Force Meetings, and be sure to subscribe to see all of the upcoming recordings too!
“Be Sure to Take It with Some Fats:” How Modulators Can Require Changes in CF Diets
The week I started Trikafta, I experienced an unexpected side effect: constipation. I soon learned that I was an outlier patient, and that I needed to reduce my digestive enzyme dosage due to the drastic effect of the modulator on my gastrointestinal system. I learned...
Modulators and Nutrition PTF – Aug 5
PTF Meeting Summary: Heart Health and CF
On Monday, May 23, 2002, Dr. Jennifer Goralski, Associate Director of the UNC Adult Cystic Fibrosis Center gave a presentation about heart health and CF. Read the full summary here.