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.   Salt in My Soul May 20, 2019 09:38 am | Luisa Palazola Replies: 0 Salt in my Soul is a book that recently came out, by the late Mallory Smith, who passed away from CF related complications. The book is a collection of her journal entries that span over the last 10 years. While her writing in itself is poignant, her entries reflect her life through high school, university at Stanford, family and her boyfriend, and her “fight” with b cepacia, and by extension CF. I haven’t quite finished the book yet, as it is a bit difficult. But: 1. Have you read her book? 2. Do you chronicle your life in this way? Read More 31 Days of CF: Catherine May 20, 2019 09:27 am | Luisa Palazola Replies: 0 View this post on Instagram ⁣Day 20 of 31 Days of CF ⁣ Topic: Guide to University ⁣ ⁣ The lovely @catheriine98 is currently studying to be a school teacher. Here are a few things she’s learned from her uni experience:⁣ ⁣ CF Clinics⁣ Before I left for uni, I met with the CF team at the nearest hospital, so that I could get to know their faces and work out a shared care plan. This means I can visit both my university and my home CF team, so I always have CF care nearby. I don’t know how I would be coping without the help of my lovely team at uni!⁣ ⁣ Treatments Away from Home⁣ Moving away from home for the first time with the burden of medications was quite daunting. I was now suddenly in charge of all my hospital visits, prescriptions and adhering to my treatments (although I had mum on the phone regularly to check this at first!). It’s so easy to get caught up in university life and forget treatments, but I had to find a treatment regime that worked for my new lifestyle so I could stay well enough to complete my degree.⁣ ⁣ Sports Clubs⁣ As we know, exercise can provide amazing physio to the lungs of those with CF. Universities provide a wide range of sports clubs, so I immersed myself in trying out some of these, from trampolining and competitive cheerleading, to kayaking, climbing and skydiving!⁣ ⁣ Studying⁣ I have been fortunate to have a really supportive tutor at uni, who has helped make adjustments for my condition. I have teaching placements as part of my degree, so he has ensured that I’m not placed further than a 50 minute commute away from university, so I’m still near the hospital and have time to get my treatments done each day.⁣ ⁣ Accommodation⁣ Living in halls with a group of new people was great fun! I chose to explain my CF to them fairly early on, so that they wouldn’t question my constant cough, pills, washing nebs. They took it well and it definitely made my life easier, although it is always a very personal decision whether or not to tell others about CF. After first year, I moved in with a small group of friends who knew about my CF.⁣ If you’d like to have a chat about uni and CF, feel free to DM me ⁣ ⁣ ⁣ *CFNT would also recommend registering with disability! A post shared by CFNewsToday (@cfnewstoday) on May 20, 2019 at 9:32am PDT Read More How Does BMI Impact Children with Cystic Fibrosis? May 20, 2019 05:48 am | Cystic Fibrosis News Moderator Replies: 0 A study has found that rapid weight gain early in life can have a long-term negative impact on the growth of children with cystic fibrosis. Click here to find out why. What do you think of this study and its findings? Read More Can Bateria-Killing Viruses Protect Against Infection in People with CF? May 20, 2019 05:47 am | Cystic Fibrosis News Moderator Replies: 0 A case study reports that phages, or viruses that kill bacteria, are a potential personalized therapy against infections caused by antibiotic-resistant bacteria. Click here to find out how this treatment could potentially benefit people with cystic fibrosis. What do you think of this news? Read More Watch Out for These 7 Germ Risks May 17, 2019 03:00 am | Cystic Fibrosis News Moderator Replies: 0 There are legions of germs risks everywhere we go, but there are seven in particular that aren’t talked about often despite how dangerous they can be for people with cystic fibrosis. Click here to find out more about these seven deadly germs. Were you aware of these seven germs? How do you protect yourself from germs when you’re out and about? Read More Josh Llewellyn-Jones Goes Live with His Health Tips! May 17, 2019 02:57 am | Cystic Fibrosis News Moderator Replies: 0 Click here to watch a Facebook Live video with Josh Llewellyn-Jones in which he talks about how important staying fit and healthy is for people with CF. Are you physically active? What are some of your favorite ways to stay fit? Read More How is Virtual Reality Being Used to Help CF Patients? May 17, 2019 02:52 am | Cystic Fibrosis News Moderator Replies: 0 In their minds, cystic fibrosis patients are cycling through an African safari, exploring the animals and environment. In reality, they’re sitting atop a bike machine with a thick, black visor engulfing half their face. The University Hospital Llandough in the U.K. is conducting a first-of-its-kind trial, implementing virtual reality into hospitalized CF patients’ physical therapy —  a technique that’s being called “distraction therapy.” Read more about it here. Have you ever heard of distraction therapy? If so, have you ever tried it? If not, would you like to? Read More Aspiration Needs Greater Attention in the CF Community May 17, 2019 02:51 am | Cystic Fibrosis News Moderator Replies: 0 Dr. Gwen A. Huitt is an infectious disease doctor at National Jewish Health with a special interest in mycobacteria, bronchiectasis, and cystic fibrosis. Dr. Huitt is very concerned about the hidden dangers of a major medical issue she feels doesn’t receive the attention it needs in the CF community — aspiration. Click here to read more about aspiration and the risks it presents for people with cystic fibrosis. Do you know much about aspiration? Have you ever experienced it? Do you agree with Dr. Huitt’s opinion that it warrants more attention? Read More Can a Wristband Detect Cystic Fibrosis? May 16, 2019 12:39 am | Cystic Fibrosis News Moderator Replies: 0 A wristband has been designed to help doctors detect diseases like cystic fibrosis and diabetes. The wearable device has a mechanism that can determine the levels of sodium and chloride in a person’s sweat — two properties which, if elevated, can indicate cystic fibrosis. Click here to find out more about this cool new health innovation. What do you think about this device? Do you know of any other cool health innovations like this diagnostic wristband? Read More Trial of Nebulized CF Candidate Completes Single-ascending Dosing May 16, 2019 12:38 am | Cystic Fibrosis News Moderator Replies: 0 The RESTORE-CF trial, investigating Translate Bio’s nebulized therapy MRT5005, has completed the single-ascending dose regimen in patients with CF. Read more about the trial and its results here. What do you think of this news? Read More