How to Keep a Healthy Mindset when Unwell with CF
– Written by Aoife P. R. I was recently discharged from a 2-week stay in hospital. My chest got quite tight and my weight dropped significantly too, so I knew pretty quickly that 2 weeks of IV antibiotics were necessary. To be honest, I was feeling so lousy that I …
Tips on Taking Care of Your Lungs with COVID-19 (from a successful Cystic Fibrosis patient)
The cystic fibrosis community is at high risk for serious complications from COVID-19. Through a recent survey of the online patient and caregiver CysticFibrosis.com community (200+ participants) conducted by the non-profit CFTechnology.org, we discovered that CF patients are faring quite well at home. This is in great part because they …
DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)
**Note: this is not medical advice and this method has not been approved by any medical professionals or suppliers. It is just a workaround method used by someone with CF. It should only be tried on nebulizer parts that can be boiled** My DIY nebulizer sterilizer hack I have a confession: …
Cure-E-Us…Cystic Fibrosis 2018!
Cure-E-Us! Strange as it may seem in this time of healthcare anxiety, and a period of sustained political transformation during which our ways of seeing the world, understanding and caring for ourselves physically, mentally, and spiritually are being challenged, we may see this as an opportunity to future cast. Indeed, …
A Conversation with Gunnar Esiason
Gunnar Esiason is the son of retired American NFL quarterback, Norman (Boomer) Esiason. He is twenty-six years old and living with cystic fibrosis. He is currently the director of the patient advocate program at the Boomer Esiason Foundation in Garden City, New York. Their mission is to heighten awareness, education …
Digital Spirometry and the Cystic Fibrosis patient
For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can …
An App for Cystic Fibrosis to bring Data to Market
Update on our app for Cystic Fibrosis: the pilot study We are getting ready for our Pilot Study: 20 patients for 30 days using a customizable app that measures 18 different modules for CF. I recorded the above 2 minute audio slide show overview of the presentation I gave at …
Fertile Areas for Experimentation: a New App for Cystic Fibrosis!
One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …
Evolution of a New App for Cystic Fibrosis management
Behind The Scenes With A New App For Managing Your Cystic Fibrosis By Jeanne Barnett, founder of CysticFibrosis.com In my 21 years of operating CysticFibrosis.com and from reading over two million messages in our forums, I’ve learned that CF patients generate fascinating data that is valuable to other patients, caregivers, …
Think INSIDE the box for easier inhaled treatments – cystic fibrosis treatment
It’s taken me a long time, but I finally have a ‘system’ that has made inhaled treatments easier to keep up with. Background In childhood, I was very compliant with the CF treatments, as my parents helped me. I didn’t need to think about it; it just happened. In my late …