{"id":8841,"date":"2022-06-13T08:22:09","date_gmt":"2022-06-13T08:22:09","guid":{"rendered":"https:\/\/www.booksofall.com\/vi\/?post_type=product&#038;p=8841"},"modified":"2022-06-13T08:22:10","modified_gmt":"2022-06-13T08:22:10","slug":"surviving-through-science-life-with-cystic-fibrosis","status":"publish","type":"product","link":"https:\/\/www.booksofall.com\/vi\/surviving-through-science-life-with-cystic-fibrosis\/","title":{"rendered":"Surviving through science: life with cystic fibrosis"},"content":{"rendered":"<h4 id=\"standfirst\" class=\"article__standfirst\">Not long ago, children with cystic fibrosis were lucky to reach adulthood. They are now likely to live into their 40s and beyond. Penny Sarchet reports.<\/h4>\n<aside class=\"article__aside\">\n<div class=\"article__aside__section article__share-buttons\" role=\"group\">\n<p>I might never have met Rob if it hadn\u2019t been for his disease. At university he could be a very hard man to find between lectures, orchestra rehearsals, choir, trampolining \u2013 his enthusiasm for life would rival that of three people. But Rob does a lot of what he does because it literally helps him survive.<\/p>\n<p>\u201cWhen he was born I thought, right, I\u2019ll do everything and anything in my power to give him the best chance,\u201d says his mother, Alison. Doctors told her exercise was crucial \u2013 and the earlier the better. \u201cWe started him swimming as soon as he had had his vaccinations at four months \u2013 he went every week. We\u2019d chuck him up and down in the air and throw him around to mimic a trampoline. He trampolined every week from the age of two until he was 16. He was going to learn the trumpet but the hospital said woodwind would be better, so he went straight onto the saxophone at about eight years old.\u201d<\/p>\n<p>The trumpet was my instrument, and I got to know Rob playing in the same student soul band. He was the boy with an infectious laugh who shared my enthusiasm for Motown, not the boy-who-has-a-genetic-disease. The only outward indication of his condition still happens at meal times, when he subtly pulls out a medicine jar and, with a skill that comes from decades of practice, swiftly swallows a handful of pills in a single gulp.<\/p>\n<p>These capsules contain the digestive enzymes Rob needs to process food properly. They are only a hint at the burdensome and repetitive regime he follows every day. But they are also a symbol of how continual improvements in medication and treatment throughout Rob\u2019s life have made it easier to live with his condition \u2013 and hugely increased his life expectancy.<\/p>\n<h4>Reference:<\/h4>\n<ul>\n<li><a href=\"http:\/\/www.nature.com\/news\/2009\/090708\/full\/460164a.html\"><em>Nature<\/em>\u00a0article on the genetics of CF, 1989\u20132009<\/a>.<\/li>\n<li>The Cystic Fibrosis Trust\u2019s\u00a0<a href=\"http:\/\/cysticfibrosis.org.uk\/50timeline\">timeline of the last 50 years<\/a>.<\/li>\n<li>Jack Riordan and his colleagues announced their\u00a0<a href=\"http:\/\/www.sciencemag.org\/content\/245\/4922\/1066.short\">discovery of the CF gene in an article in\u00a0<em>Science<\/em><\/a>\u00a0in 1989.<\/li>\n<li>Rob recorded a\u00a0<a href=\"http:\/\/healthtalkonline.org\/young-peoples-experiences\/clinical-trials\/robert-interview-26\">series of interviews<\/a>\u00a0in 2010 about his experiences of participating in clinical trials for the Youth Health Talk website.<\/li>\n<li>Oli Rayner, who has CF, shared his\u00a0<a href=\"http:\/\/www.spititoutblogspot.com\/2013\/04\/speech-to-cf-trust-scientific.html\">perspectives on clinical progress and treatment challenges<\/a>\u00a0at the CF Trust\u2019s scientific conference in 2013.<\/li>\n<li>The\u00a0<a href=\"http:\/\/www.nhs.uk\/Conditions\/cystic-fibrosis\/Pages\/Introduction.aspx\">NHS Choices website explains CF symptoms, diagnosis and treatments<\/a>, as well as listing CF-related clinical trials.<\/li>\n<li>The CF Trust\u2019s list of\u00a0<a href=\"http:\/\/www.cysticfibrosis.org.uk\/about-cf\/frequently-asked-questions\">frequently asked questions about CF<\/a>.<\/li>\n<li><a href=\"http:\/\/www.cfgenetherapy.org.uk\/index.html\">The UK Cystic Fibrosis Gene Therapy Consortium.<\/a><\/li>\n<\/ul>\n<\/div>\n<\/aside>\n","protected":false},"excerpt":{"rendered":"<p><iframe style=\"width: 100%; height: 750px; border: none;\" src=\"https:\/\/online.visual-paradigm.com\/share\/book\/surviving-through-science-life-with-cystic-fibrosis-zienpiggm?enforceShowPromotionBar=true\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n","protected":false},"featured_media":8846,"template":"","meta":{"_yoast_wpseo_title":"","_yoast_wpseo_metadesc":"You can share the best ideas and insights with flipbooks like this one just few clicks your can share on social media. 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