Surviving Through the Pandemic Isolation in Ireland with CF
Saying Good-Bye to One Emotional Roller-coaster… January 2019. Fatigued, emotional, drained, fragile but eternally grateful, I was ready to take life by the horns as I had just finished 25 sessions of radiotherapy. It had been an extremely tough 10 months, having to leave my new home, job and friends …
How Breathwork Can Help Cystic Fibrosis
Deprived of a Beneficial Therapy? Although I’ve been in and out of hospitals since my diagnosis of Cystic Fibrosis at 9 years of age, I have never had a CF specialist of any kind teach me the basics on how to breathe correctly or optimally. This sounds a bit bizarre …
Food, Glorious Food! – by Sarah Leigh Milczanowski
A LITTLE BIT ABOUT ME Hi all readers, I am Sarah. I’m 34 years old, I live in the UK and I have Cystic Fibrosis. The topics below are issues I have faced myself, sought help with and overcame so I wish to try and help others I really do …
My Top Tips for Sleepless Nights with Cystic Fibrosis – by Aoife P. Rafter
I’m sure many of you are aware of the importance of sleep in order for the body to recover from illness and reach a point of homeostasis – when all the systems of the body are balanced and can work together. But unfortunately, having CF can often come in hand …
Introducing Alison Smith – founder of Cystic Fibrosis Mummies
My name is Alison. I am 38, I am married to Adam and we live in Northamptonshire, Uk, in a house we own. We have a daughter, Harriet, who is 12 years old and we have two cocker spaniels and a cat. Very normal. Very ‘average’. If you were to peek …
Different with Cystic Fibrosis: The struggle of feeling ‘different’ from your peers at school and how to overcome this – Cerys Upstone
Everyone wants to blend in to an extent and be accepted. We all follow the status quo, and whilst we all reveal different personalities, there is a societal expectation to follow the same sort of path in life. In school especially, there is an inbuilt wariness of those who are …
Aoife P. Rafter – My Battles with Cystic Fibrosis & Cervical Cancer
The Trip of a Lifetime The trip of a lifetime was quickly approaching. I was feeling fitter and healthier than ever from all the training I was doing. I mean after all, I needed to increase some body strength in order to carry a 10kg backpack full of all my …
Roche Virtual Summit Lauren Brenneman speaks Innovation and the CF community
Lauren Brenneman of CFTEchnology speaks about the mission of patients to take charge of their data at the Roche Virtual Summit Patient Panel
Anxiety in CF: Can CBD oil help?
Most CF patients experience anxiety about their health. Anxiety and depression may be increased by ingestion of many common CF drugs and therapies (1,2). Is it possible that CBD oil could help with anxiety? Cannabidiols (CBD) are reported in the literature(3,4) and on social media to help alleviate anxiety as …
CFTechnology and CreativeDestructionLab
Discovery, Research, and the Economics of Human Data OUR REQUEST: As supporters of our community, we are reaching out to you. CFTechnology.org is at a tipping point- we are poised to become members of the Creative Destruction Labs 2020 cohort and are asking for letters of support for this next, …