Before this month closes, because I am not sure if I will have the brain cells in the next few days to write – I have to, have to, have to spotlight Josh Llewellyn-Jones, a 30 year old CFer that lives in Wales. The first time I saw him, I could not believe he had […]
Monthly Archives: May 2018
May is CF awareness month – welcome to becoming aware, four
Organ donation and becoming an organ donor – Please become one if you haven’t already! Organ transplant – two words that sit in the back of many if not most CFers’ minds. There are a few people in my life that inspire me and one of them is Claire Wineland. This girl has gone through […]
May is CF Awareness month – welcome to becoming aware, three
Philosophy: I often ask myself and quite confused why some CFers are healthy and why some are not? What is that each of us are doing so differently? Is it because of their genotype? Perspective? Medications? Care center? Routine? What is it? To de-clutter the confusion, the genotype matters. I am not going to go […]
May is CF Awareness month – welcome to becoming aware, two.
Genetics – let’s keep this simple. I have to keep it simple. This is straight out of the CF Foundation as they have perfected the language: “To have cystic fibrosis, a child must inherit one copy of the cystic fibrosis transmembrane conductance regulator (CFTR) gene mutation from each parent. People who have only one copy […]
May is CF awareness month – welcome to becoming aware
I have been writing this blog for a few years now, and I have never mentioned it. In the past, I have often thought “People know what it is.” However, it seems they often half know what it is. Whenever I am in a new space, people often notice that I am taking something like […]