Cystic Fibrosis News Today Weekly Forum Digest

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PFT anxiety

Jul 08, 2019 03:15 pm | Tré LaRosa

Replies: 0

Do you get anxious about your PFTs? Why or why not?
What do you in preparation for it? Both in the days and minutes before?
Are your PFTs stable? Feel free to not share about this if you’re not comfortable.

Exercise Test

Jul 08, 2019 03:13 pm | Tré LaRosa

Replies: 0
A couple of weeks ago, I did an exercise test for the first time. It was really cool to see what my VO2 max is.

Have you ever done an exercise test? Was it routine or for something else?
If you’re comfortable, what was it? How did it compare to your PFT?
Was it strenuous? Did you have a hard time?

Finding My CF Community Has Restored My Sense of Belonging

Jul 08, 2019 06:58 am | Marta Ribeiro

Replies: 0
Columnist Tré LaRosa shares how he has rediscovered a sense of belonging and community with his fellow CF writers since his sister’s death. Click here to read more from Tré.
Can you relate to Tré?

CF Lung Infection Therapy AR-501 Granted FDA Orphan Drug Status

Jul 08, 2019 06:57 am | Cystic Fibrosis News Moderator

Replies: 0
Aridis Pharmaceuticals’ AR-501, an inhaled formulation of gallium citrate for chronic lung infections, was granted the FDA’s orphan drug status. Read more here.
What do you think of this news?

Children’s Book ‘Our Baby has Sixty-Five Roses’ Launched by CF Parents

Jul 04, 2019 07:52 am | Cystic Fibrosis News Moderator

Replies: 0
Two Irish mothers whose children have cystic fibrosis launched a book, “Our Baby has Sixty-Five Roses,” to explain the disease to young children. Read more about it here.
Have you read this book or would you like to?

From Boom to Bust: Managing Work with CF

Jul 04, 2019 07:50 am | Cystic Fibrosis News Moderator

Replies: 0
Columnist Elly Aylwin-Foster knows that too much of anything can be bad for her mental health. She makes sure to take time for rest, work, and play. Click here to read more from Elly.
Can you relate? What do you do to take care of your mental health?

Ultrasound Can Help Detect Liver Disease in Kids with CF, Study Says

Jul 04, 2019 07:49 am | Cystic Fibrosis News Moderator

Replies: 0
163A research study has shown that ultrasound imaging can be useful for clinicians to identify liver disease in children with cystic fibrosis. Read more about it here.
What do you think about this study and its findings?

Soul Sisters: My Reflections on Mallory Smith’s Memoir

Jul 04, 2019 07:47 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read Ella Balasa’s thoughts on a fellow CF warrior’s posthumous memoir.
Such an inspiring story and column. What did you think about this article?

Dietitians Want Better Access to Relizorb for CF Patients on Feeding Tubes

Jul 04, 2019 07:46 am | Cystic Fibrosis News Moderator

Replies: 0
More than 60 cystic fibrosis experts strongly support Relizorb being made available to CF patients on tube feeding, pushing in a commentary for the insurance coverage that’s generally denied this digestive enzyme cartridge, and inviting “the CF community” to become advocates of better patient access to the device. Read more about this issue here.
What do you think? Do you agree that Relizorb should be more accessible for CF patients?