{"id":57,"date":"2023-11-06T10:46:14","date_gmt":"2023-11-06T10:46:14","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/en-gb\/liveunlimited\/?page_id=57"},"modified":"2024-06-25T16:07:52","modified_gmt":"2024-06-25T16:07:52","slug":"video-stories","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/video-stories\/","title":{"rendered":"Video stories"},"content":{"rendered":"
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\n\t\t\t \t\t\t\t Life is complicated when you don’t have the tools you need<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t

VIDEO STORIES\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

As part of the Live Unlimited campaign, we travelled across Europe to meet adults living with PKU<\/a> and to hear stories of their experiences, the challenges they face, and what action they want to see implemented to improve care.<\/p>\n

These stories have been developed alongside the six patient groups and their memberships: AMMeC and Cometa A.S.M.M.E (Padua) (Italy), Les Feux Follets (France), Svenska PKU-f\u00f6reningen (Sweden), PKU Aile Derne\u011fi (Turkey), and FEEMH (Spain).<\/p>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n\n

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\u201cI went to my GP who had known me since I was a child and he did not want to prescribe any medical food. I tried every other clinic near where I lived. I was sent away by every GP. I was desperate. I was feeling very bad and wanted to start managing my PKU again. I asked for help and they told me I had fallen through the cracks, given I am not a child anymore, I haven\u2019t followed through, and getting back is hard. These experiences were very disappointing for me.”<\/em><\/p>\n

Watch Michelle’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\n

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“I think one of the things most PKU patients my age are concerned about is what will happen in the future. In my case, I am the first generation detected at birth so there isn\u2019t any information available about a person aged 50 in this moment. It does make me feel scared, I don\u2019t know what to expect. PKU is a serious condition and if you don\u2019t treat it from the beginning, it can have consequences.”<\/em><\/p>\n

Watch Raquel’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\n

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\u201cPKU is not a childhood disease. The reason why it\u2019s treated like a childhood disease is because they don\u2019t consider adults at all. They do the blood spot once a year and throughout the rest of the year they know about their condition.\u201d<\/em><\/p>\n

Watch Nicol\u00f2’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\n

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“PKU is a serious illness because, if it is not detected at birth, its consequences are really dramatic. It can lead to a physical or mental handicap.”<\/em><\/p>\n

Watch Antoine’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\n

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“I felt like the older I get the less attention I get. It gets more and more confusing as to know what\u2019s going to happen next. Who\u2019s going be my doctor? Who am I going to meet? Who knows about my blood test? Just confusion in general I think. Between the age of 18 and 20, which I am now, I was still treated as a child patient even though I was technically a grown-up” <\/em><\/p>\n

Watch Eva’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\n

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\u201cThere are approximately 10,000 PKU patients across Turkey and only 50 metabolic doctors to take care of them. That\u2019s a big issue \u2013 we have a lack of doctors and a lack of metabolic centres.\u201d<\/em><\/p>\n

Watch Lal’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\n

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\u201cIf I had to give a one-word definition for this disease, I would say self-discipline as one has to control themselves continuously until the end of their lives.\u201d <\/em><\/p>\n

Watch Piroska’s Story<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"acf":[],"yoast_head":"\nVideo Stories | Live Unlimited PKU<\/title>\n<meta name=\"description\" content=\"As part of the Live Unlimited PKU campaign, we travelled across Europe to meet adults living with PKU and to hear stories of their experiences.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/video-stories\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Video Stories | Live 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