But You Look So Well | CF Blog
Cystic Fibrosis Blog – A journey to lung transplant
For four years the CF community, particularly the CF Trust, have been campaigning for Orkambi to be prescribed on the NHS in the UK. This drug is a precision medicine which helps CF patients with two copies of the F508del mutation (approximately half the CF patients in the UK) Eventually a deal was struck between (not so) NICE and the manufacturers Vertex and CF patients now have access to these
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Subtitled, how did I get so old? But more importantly, I am really glad I am so old! Twenty year anniversary of going to uni! In late September 1999, as the media ruminated the cause of Princess Diana’s fatal accident, Lance Armstrong powered to Tour de France victory, paper ‘solar eclipse’ glasses gathered dust and frantic preparations were being made before the deadly Millenium Bug hit us, I began university
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I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) in my mid-teens, shortly before my 14th birthday. I remember being in hospital and my schoolmates kindly doing a collection to buy a present, clubbing together to buy me Smash Hits 95. I clearly remember the double cassette (it was the mid 90s, I was years away from a CD player!) with hits of the era including: Dreamer by Livin Joy,
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As much as I like to think of myself as independent and my stock answer for people asking me how I am is ‘ok-fine- and-you’, I have to admit that my body really does have limitations. These limitations now mean I’ve stopped doing a lot of things I used to enjoy. My ability to cover much ground at more than a snail’s pace is one of these. After a particularly
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