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Incidence of CF-related Diabetes Stable in Pediatric CF, Study Finds

May 27, 2019 01:26 am | Cystic Fibrosis News Moderator

Replies: 0
The incidence rate of cystic fibrosis-related diabetes (CFRD) in children has been stable over time, according to a Canadian multi-center registry study. Click here to learn more.
What do you think of this news?

New Program Gives Uninsured Patients Better Pancreaze Access

May 27, 2019 01:14 am | Cystic Fibrosis News Moderator

Replies: 0
Vivus, together with HarborPath Direct, announced a collaboration to facilitate access to Pancreaze (pancrelipase) to patients without health insurance. Read more about the partnership here.
Did you know about this collaboration? What are your thoughts about it?

Vegetables

May 24, 2019 04:57 pm | Tré LaRosa

Replies: 1
I actually do like vegetables but I’m not exactly great at implementing them into my diet.
1. Do you eat (enough) vegetables? What are some of your favorites?
2. How do you implement them into your daily diet?

This Peptide May Lower Bacteria’s Antibiotic Resistance

May 24, 2019 12:17 am | Cystic Fibrosis News Moderator

Replies: 0
Expression of RpoN* in P. aeruginosa isolates from CF patients increased their bacterial susceptibility to antibiotics and reduced virulence, a study finds. Read more about it here.
What are your thoughts about this study and its findings?

Celebrating Research Progress During CF Awareness Month

May 24, 2019 12:16 am | Cystic Fibrosis News Moderator

Replies: 0
In recognition of Cystic Fibrosis Awareness Month, Brad Dell has put together an assessment of the progression of CF science and his personal views regarding the disease. Click here to read it!
Did you enjoy this article? How have your personal views on CF changed over time?

Late Assignments and Uni

May 23, 2019 10:56 am | Luisa Palazola

Replies: 0
1. It doesn’t have to be perfect. It doesn’t have to be good. It just has to be turned in. This made me feel like shit often times, because my work didn’t reflect what I was capable of. But, fast forward a month, a semester, or years later — it’s okay!
2. Communication. Let your professors know you’re balancing a lot — and, that it is possible you get sick again. Most professors are really compassionate.
3. If you’re struggling, again — communication and office hours (if possible). It wasn’t until my last year of college that I really took advantage of my professor’s office hours. I missed about two weeks of my political stats class, and was incredibly lost. My professor sat with me in his office hours and taught me one on one. It took me a lot of courage and swallowing my pride to do that. Learn from me, just go to office hours. Also, some professors are willing to share their presentations, it depends.
4. Having either a note taker or try to develop a friend in the class (one who is preferably on top of their studies). So they can take pictures of notes and potentially help you study.

Bridging the Gap Between Patient and Clinician

May 23, 2019 10:42 am | Luisa Palazola

Replies: 0
On our recent feature, 31 Days of CF, we had Nicholas as our guest. Nick is both a CF patient and a practicing dietician. Here is what he has to say about his roles.

View this post on Instagram

Day 21 of 31 Days of CF ⁣⠀ Topic: Bridging the gap between clinician and patient⁣⠀ ⁣⠀ Hello, my name is Nick and I have Cystic Fibrosis. I have thrived despite my disease. I am a Registered and Licensed Dietitian with my Master's in Food and Nutrition. I'm also a national public speaker, professional dancer, entrepreneur, patient advocate and fashion designer. ⁣⠀ ⁣⠀ I had strived to use my insight to bridge the gap between the clinician and patient relationship. As a speaker, clinicians ask me how they can make their patients take their meds and be more compliant. While these inquiries are appropriate and well meaning, they hardly help healthcare professionals have fruitful interactions with patients for 2 reasons: either they don’t know why their patients don’t take meds or they can’t relate to the provided reasons. This may seem trivial, but it’s not, not when it’s a byproduct of what I call the “healthy person’s mind-state”. Therefore, it is crucial that clinicians understand it is not our job to minimize or rationalize a patient’s reasoning, but to provide solutions based on the issues they present using the expertise, knowledge, and skills possessed. ⁣⠀ ⁣⠀ Conversely, patients ask “Why does it take so long for me to be seen by my doctor or what certain clinicians roles are.” These questions are important, as it speaks to the fundamental disconnect for the processes associated with the healthcare system and the job clinicians execute. For example, a patient only knows they have an appointment time of 11:30am with their doctor, however, they don’t understand within that time they are also scheduled to see 6 other clinicians, each getting 10 minutes (that’s an hour). Plus, each member must coordinate seeing that patient and 3 other patients which takes approximately 10 minutes per clinician. The patient also doesn't see the social worker spending 3 hours on the phone trying to get prior authorization for a medication, or the dietitian at home searching alternative therapies until 8pm. This lack of understanding expands the gap and disconnect between clinician and patient. We need to treat each other as humans, not systems or labels.⁣

A post shared by CFNewsToday (@cfnewstoday) on May 22, 2019 at 1:30pm PDT

1. How would you like to see better collab between the two?

Where Do You Fit in the CF Community?

May 22, 2019 11:35 pm | Cystic Fibrosis News Moderator

Replies: 0
Tré LaRosa supports the idea of people with CF being paid advocates for the CF community. Click here to find out why.
Do you agree with Tré? Would you like to be compensated for your advocacy work on behalf of the CF community?

Celebrating CF Awareness Month with Bike Rides, Walkathons and More

May 22, 2019 11:34 pm | Cystic Fibrosis News Moderator

Replies: 0
Cystic Fibrosis Awareness Month is observed in the United States in May with bike rides, long walks, and fundraising events that help generate awareness and support for people living with the disease. Read more ab out this year’s campaign here.
What are you going to do this month to raise awareness about CF?