Topics in the CF News Today Forum That You Might Have Missed

Cystic Fibrosis News Today Weekly Forum Digest Join the discussion! See below for the latest topics and conversations about CF taking place in our forums. Your voice is needed! New to our forums? Register here.   Copeptin a Potential Biomarker of CF Symptom Severity During Pulmonary Exacerbation, Study Shows Dec 17, 2019 02:33 am | Cystic Fibrosis News Moderator Replies: 0 Copeptin, a peptide found in high levels in some children with cystic fibrosis, is a potential biomarker of symptom severity, a study shows. Click here to learn more. What do you think of this news? Read More Physical Illness Vs Mental Illness: Why? Dec 16, 2019 11:11 am | Bailey Vincent Replies: 0 QUESTION: Is physical illness taken more seriously than mental illness? My column tomorrow is about a tricky subject: mental health. And, mostly, the ways in which I’ve failed to advocate appropriately for mental health amongst my peers. It all started because I was talking to a friend about Lewy Body Dementia, which killed Robin Williams. At the time, I was contextualizing it as inherently different from depression with suicidal delineations, since it’s technically more somatic in nature. We also talked about the movie Still Alice. It is probably one of the most empathy-inducing films I have seen for awareness of Alzheimer’s and correlating diseases. “Everyone should see that movie once in their life,” I told my friend, “It will create empathy for those battling brain disorders.” But this goes back to my original problem… What is the difference between brain disease and mental illness? Yes, there is a difference in terms of biology but… Do we find that diseases which impact our mind (like dementia) get less sympathy than those that impact our body? I believe the answer is yes. We seem more likely to trivialize or disregard the harrowing impact of a disease, when it’s less somatically apparent, and more impactful of personality. In short, if a disease messes with our communication skills or makes us seem less intelligent to the outside world, the world seems far less likely to champion, relate to, or fight for the cause. Why? I’d love to know your thoughts and experiences on this subject! Read More Quebec Loans $2.7M to Finance Trial Testing Oral LAU-7b for All CF Types Dec 16, 2019 04:25 am | Cystic Fibrosis News Moderator Replies: 0 The Government of Quebec, in Canada, will loan Laurent Pharmaceuticals $2.7 million Canadian to help finance a trial testing oral LAU-7b for all CF types. Read more here. How do you feel about this news? Read More What cleaning products do you use in your home? Dec 13, 2019 06:59 am | Jenny Livingston Replies: 0 I find that many cleaning products contain harsh chemicals that irritate my lungs and sinuses. I prefer to use natural alternatives for some cleaning (for instance, I make a solution with vinegar, a few drops of dish soap, and essential oils for kitchen counter tops and some of my floor surfaces) but I worry that natural cleaning agents don’t disinfect well enough. Do you have any household cleaning tips? Have you been able to find cleaning products that aren’t harsh or irritating? Share your tips and tricks here!  Read More How Do You Balance The Work Push With Health? Dec 13, 2019 06:54 am | Bailey Vincent Replies: 0 QUESTION: When was the last time you pushed your body too hard? I do this all the time (and just wrote about it, in fact). I don’t know if it’s good or bad, honestly. Sometimes I wonder if my family had more income (without my participation), if I would feel the need to do so as much? But I need to and so… Here we are. I pushed myself too hard a few weeks ago with back to back performances and events, and ended up in the hospital. Now, I’m about to push again in order to get through a few shows and work events before the holiday break. Sometimes I find that everything compounds around the holidays… What about you? Read More Vertex Reaches Agreement for CF Medications in Northern Ireland, Wales Dec 13, 2019 04:38 am | Cystic Fibrosis News Moderator Replies: 0 People with cystic fibrosis living in Northern Ireland and Wales now will have access to all currently approved Vertex medications for CF. Read more about it here. What are your thoughts about this news? Read More “Does Educating Others About Your Disease Feel Like a Blessing or a Curse?” Dec 12, 2019 07:31 pm | Bailey Vincent Replies: 2 QUESTION: Does educating others about CF feel like a blessing or a curse? I posted on my Instagram about fighting for accommodations as a Deaf person and the many ways in which I fail. Often, I’m tired of having to “fight the good fight” to get others to understand needs outside their own, and wish I could retract entirely. This is of course not how we create change in the world…. But it sure would be easier! Have you had to advocate for yourself this week? Do you resent it or rise to the occasion? There are no wrong answers! Read More Do You Get Fitness and Nutrition Envy? Dec 12, 2019 10:14 am | Bailey Vincent Replies: 0 QUESTION: Do you get fitness and nutrition envy? I am a sucker for the health industry. As a dancer, I like to (try) to think of myself as an athlete. I obsess over the latest in nutrition and fitness, even though I so often can’t partake in anything (as I posted about here). Since my motility issues with GI, I can’t eat most salads or raw healthy foods. I hate focusing on the “can’t”, but sometimes I do get jealous of healthy trends that don’t apply to me. Do you ever feel this way? What’s a healthy living trend you have always wanted to try? What’s something you wish was more accessible to all of us? 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