https://www.cferthorney.com/tags/cystic-fibrosis/ Recent content in Cystic Fibrosis on Cferthorney.com Hugo -- gohugo.io en-gb david@cferthorney.com (David Thorne) david@cferthorney.com (David Thorne) Mon, 19 Mar 2018 21:20:30 +0000 https://www.cferthorney.com/post/2018/03/orkambi-debate-westminster-hall/ Mon, 19 Mar 2018 21:20:30 +0000 david@cferthorney.com (David Thorne) https://www.cferthorney.com/post/2018/03/orkambi-debate-westminster-hall/ Introduction On 19th March 2018, a debate was held in Westminster Hall to debate Orkambi’s®1 availability on the NHS. Watch the debate here (Parliamentlive.tv, available until approximately 26th March 2018). [A transcript is also available] (https://hansard.parliament.uk/commons/2018-03-19/debates/41D2017B-E026-49FC-B94E-BCDB566AF1D6/OrkambiAndCysticFibrosis) (Hansard.parliament.uk. I believe this link will work permanently). The debate was attended by approximately 60 MPs, but attendance at Westminster Hall debates are normally attended by under 15 MPs. The debate was in response to ePetition 209455 (parliament. https://www.cferthorney.com/post/2017/07/orkambi-and-me/ Wed, 19 Jul 2017 10:18:40 +0100 david@cferthorney.com (David Thorne) https://www.cferthorney.com/post/2017/07/orkambi-and-me/ It’s happened, I’m on ORKAMBI®. Those readers who are: Eating Of a sensitive nature to medical words about body fluids may wish to consider either avoiding this article or returning later. It is with mixed feelings I write this post. Today I started ORKAMBI®[orkambi.com], the drug that is targeted at Cfers (A person with CF) with my genotype ΔF508 (Also known as F508Δ.) It is the most common of Cystic Fibrosis (CF) genotypes in the UK, and possibly worldwide. https://www.cferthorney.com/archive/2016/11/site-update-update/ Wed, 30 Nov 2016 12:25:31 +0000 david@cferthorney.com (David Thorne) https://www.cferthorney.com/archive/2016/11/site-update-update/ No excuse, no excuses. This is more of an explanation and apology than an excuse (Although I am sure there are some who see them as something highly similar!) The update of davidthorne.net has been delayed. I’ve finally commissioned a designer, and we’re going to be working on the new design by January (The delay is mine, I was in hospital over late October and half of November). The content reorganisation is mapped out (As soon as I work out a good way to share it I will, I intend to open source as much of the process I use as possible), the code I want to write for displaying my CV [github. https://www.cferthorney.com/archive/2013/10/general-update-its-been-while/ Fri, 11 Oct 2013 13:08:20 +0100 david@cferthorney.com (David Thorne) https://www.cferthorney.com/archive/2013/10/general-update-its-been-while/ Some links have been stripped from this article due to age and inaccessibility. So it’s been a while since I wrote anything on this blog. My bad. I’ve been busy living. My last (published) article (I have several drafts I’m debating finishing or just scrapping) was Theming miniseries :: Omega a review [cferthorney.com] and the mini series was out to review the most recent versions of 4 popular base themes for Drupal [drupal. https://www.cferthorney.com/archive/2012/08/new-summer-project/ Sun, 12 Aug 2012 17:38:28 +0100 david@cferthorney.com (David Thorne) https://www.cferthorney.com/archive/2012/08/new-summer-project/ Some links have been stripped from this article due to age and inaccessibility. OK so I have proven decidedly rubbish as blogging in this 12412 [12412.org] lark but having said that on the front page of 12412 they have got May’s project written up in June and nothing for July, so I don’t feel too too bad (But still very guilty) I have managed to calm down a bit by looking at what I have at least tried to learn this year: https://www.cferthorney.com/archive/2011/12/additional-blog-focus/ Wed, 14 Dec 2011 13:32:40 +0000 david@cferthorney.com (David Thorne) https://www.cferthorney.com/archive/2011/12/additional-blog-focus/ Having been seriously ill over the past few weeks, I take a few minutes to reflect and look to add an additional focus to my blog… As many of my loyal readers know, I have a health condition called Cystic Fibrosis [wikipedia.org]. It’s genetic and up until recently, I haven’t been too badly affected. Sadly my health isn’t as good as it has been, culminating in me spending 3 weeks in hospital (Where I am as I write this)