Cystic Fibrosis News Today Weekly Forum Digest

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Confronting Cystic Fibrosis Myths Head-On

May 07, 2019 12:04 am | Cystic Fibrosis News Moderator

Replies: 0
Recently Luisa Palazola encountered strangers in a bookstore talking about cystic fibrosis and the movie Five Feet Apart. Recognizing that some of the things the strangers were talking about weren’t true, Luisa took a risk and spoke up to educate them about her life with CF. Read about the experience here.
Have you ever had an experience like this one? Did you speak up? Why or why not?

William

May 06, 2019 10:14 am | Luisa Palazola

Replies: 0
Hey guys, we’re stoked to have William as our MCM this week. @lungspodcast is 24 years old and lives in Birmingham, England. Here are 3 things he wants you to know about HIS life with CF:⁣⁣⁣
⁣⁣⁣

I understand how lucky I am with my CF. I got a 1st class degree at university, I’m an animator, I do stand-up comedy, I ran the London Marathon, I have an amazing fiancée and an incredibly supportive family. Although the things I’ve done are becoming more and more achievable to people with CF, I still feel very privileged as this illness continues to keep these things out of reach for many people. My parents raised me to treat my condition every day and passed on their positivity to me. I never felt limited, I just knew that some things might take more work.⁣⁣⁣
⁣⁣⁣

I created my podcast Straight from the Lungs (@lungspodcast) to share real stories from real people affected by CF: patients, parents, partners, friends, medical teams, charity workers and many others. I share my experiences with CF and those of people from the UK and US to help unite a community that cross-infection separates. All the conversations are recorded remotely online but are pieced together to be part of a shared discussion. I can only go so far to explain what CF is, as there are many facets of the condition that I don’t experience, but others do. I aim for the podcast to be as inclusive as possible, whilst being a d*mn good listen. The people I’ve worked with and interviewed have helped make my proudest project, one I hope to expand.⁣⁣⁣
⁣⁣⁣

I run to help keep healthy. I don’t often get a runner’s high, but running does offer me the opportunity to be free, to prove that I am better than my CF. The boldest display of this was when I ran the London Marathon in 2015 in 6:40:55 – I decided to take the plunge and run not just for me, but for the many people with CF who could never run. It was an incredible experience, but running isn’t always easy for me. I ALWAYS struggle to get myself out the door, every time! Sometimes I have to be kind with myself and give myself a break – run the next day. Other times it helps to boot myself out the door.⁣
To see full post click here.

Kalydeco Approved to Treat 6- to 12-month-old Infants with Cystic Fibrosis

May 06, 2019 12:22 am | Cystic Fibrosis News Moderator

Replies: 0
Kalydeco has been approved in the U.S. to treat infants from six to 12 months old, who have cystic fibrosis and at least one CFTR gene mutation. Click here to read more about this news.
What do you think of this news?

Interactions Between CF-associated Bacteria and Fungi Impact Each Other’s Growth

May 06, 2019 12:15 am | Anonymous

Replies: 0
Physical and signaling interactions between cystic fibrosis pathogens Pseudomonas aeruginosa and Scedosporium fungi affect their growth, a study says. Read more about this relationship here.
What do you think of this news?

CF “Awareness”

May 03, 2019 08:46 am | Tré LaRosa

Replies: 0
Awareness can be a dicey topic. It can feel a bit weird to be so open about our personal lives and it can have both negative and positive ramifications. What does “awareness” mean to you? How do you approach “awareness?”

CF Awareness Month

May 03, 2019 08:44 am | Tré LaRosa

Replies: 0
May is CF Awareness Month. This is a good time to be open about our experiences with CF, but it can also be hard to bare our personal lives in that way.

Do you plan on “celebrating” – that is, talking about on social media – awareness month? Why or why not?
What are some things you plan on doing?

Free Flights for People with Rare Diseases

May 03, 2019 06:32 am | Cystic Fibrosis News Moderator

Replies: 0
Patient Airlift Services relies on about 660 pilots across the U.S. who donate their time and resources to offer free flights to people with rare-disease. Read more about this amazing initiative here.
Have you heard of this initiative? Would a service like this be helpful for you?

Beyond Work: Valuing Yourself, Not Just What You Do

May 03, 2019 06:31 am | Cystic Fibrosis News Moderator

Replies: 0
Columnist and reformed workaholic Elly Aylwin-Foster recalls the grueling schedule she kept at her previous job, which resulted in serious health consequences. Click here to read more from Elly.
Do you consider yourself a workaholic? If you do, do you work hard because you enjoy it or because you worry about your value to your employer?

As a CFer, Birthdays Remind Me that Life Is Fragile

May 02, 2019 11:28 pm | Cystic Fibrosis News Moderator

Replies: 0
For Tré LaRosa, birthdays are symbolic occasions and opportunities to reflect on his life with CF. Would you like to read more from Tré? Click here!
Do you enjoy celebrating your birthday? Why or why not?

Addressing the Nees of Diabetic CF Patients on Insulin

May 02, 2019 11:27 pm | Cystic Fibrosis News Moderator

Replies: 0
Having to take insulin to treat cystic fibrosis-related diabetes (CFRD) adds to patient distress, a study says. Click here to read more about the study and its call for ways of easing this burden on patients.
Do you have CFDR? Does this study reflect your needs?