Cystic Fibrosis News Today Weekly Forum Digest

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Path BioAnalytics Licenses Cavosonstat From Laurel Therapeutics

Aug 26, 2019 04:05 am | Cystic Fibrosis News Moderator

Replies: 0
Path BioAnalytics has licensed the rights to further develop cavosonstat, a targeted therapy for cystic fibrosis, from Chinese company Laurel Therapeutics. Click here to read more.
What do you think of this information?

Let’s Talk About CF Pain

Aug 26, 2019 03:55 am | Cystic Fibrosis News Moderator

Replies: 0
Elizabeth Rogers says she hesitates to speak about her constant pain because she fears how she will be perceived by other patients. Read more from Elizabeth here.
Can you relate? How much pain do you experience and are you open about talking about it with other people?

Clinical Anxiety of an Unexpected Type

Aug 22, 2019 02:50 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read about Brad Dell’s experience with a particular type of clinical anxiety that prevented him from properly performing medical tests.
Do you ever feel anxious? What triggers that feeling for you?

My Tattoos Tell More Stories Than My Scars

Aug 22, 2019 02:48 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read Bailey Anne Vincent’s column about the meaning behind her tattoos, and how the stories they tell often eclipse her CF scars.
Do you have any tattoos? What meaning do they have for you? If you don’t have any tattoos, have you considered getting one?

Lab-grown Lungs Have Potential for Patients with CF, Other Lung Diseases

Aug 22, 2019 02:47 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read about how researchers at Yale University are trying to solve the shortage of transplantable lung material by growing them in a lab.
What do you think of this story? How do you feel about lab-grown organs?

When Will I Be ‘Sick Enough’ for a Transplant?

Aug 22, 2019 02:46 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read Ella Balasa’s reflections on physical fitness and transplant candidacy.
Can you relate? Do you also wonder when you will be ‘sick enough’ for a transplant?

SMC Refuses Recomending Orkambi and Symkevi to NHS Scotland

Aug 22, 2019 02:44 am | Cystic Fibrosis News Moderator

Replies: 0

The Scottish Medicines Consortium (SMC) has refused to recomend the routine use of Orkambi and Symkevi to the National Health Service (NHS) Scotland. Find out why here.
What do you think of this news? Do you agree with this recommendation?

Risk of CF-Related Diabetes Linked to Blood Levels of Liver Enzyme in Study

Aug 22, 2019 02:43 am | Cystic Fibrosis News Moderator

Replies: 0

High blood levels of ALT, a biomarker of liver damage, may be easy way of judging risk of CF-related diabetes, especially in male patients, a study reports. Click here to read more.
What are your thoughts about this news?

Body image for men with CF

Aug 21, 2019 09:56 am | Luisa Palazola

Replies: 1

Hi all! A friend, @jenny-livingstonrecently posted several questions about body image (a topic we’re so used to associating with women). But, this time, she wanted to know how body image affects men with CF. More specifically, what’re the ways CF has affected YOUR body image?
So:
1. How has body image affected YOU?
2. Has CF influenced your body image or self esteem?

I Can’t Visualize My Video Game Characters Without Cystic Fibrosis

Aug 21, 2019 06:09 am | Cystic Fibrosis News Moderator

Replies: 0

Elizabeth Rogers loves video games and says that though it’s a form of escapism, she can’t imagine her character without cystic fibrosis. Click here read more from Elizabeth.
Do you play video games? Do you tend to see your character as an extension of yourself or as someone completey different?