{"id":6,"date":"2023-10-31T15:24:45","date_gmt":"2023-10-31T15:24:45","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/en-gb\/liveunlimited\/?page_id=6"},"modified":"2024-06-26T15:26:57","modified_gmt":"2024-06-26T15:26:57","slug":"home","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/","title":{"rendered":"Home"},"content":{"rendered":"
Around 1 in 10,000 babies in Europe are born with the genetic condition, which is screened for during the new born heel prick test.<\/p>\n
But PKU isn\u2019t just a childhood disease. Adults with the condition have to follow treatment and a diet containing almost no protein to minimize symptoms and prevent damage to the brain1,2<\/sup>. You can find out more about PKU here<\/a>.<\/p>\n <\/div>\n \n Despite the neurological effects of the condition and difficulties following a low-protein diet, just 12% of adults<\/strong> with PKU have access to the multidisciplinary tools and support they need3<\/sup>. And some adults have to go to children\u2019s wards to receive any specialist care.<\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n The Live Unlimited campaign aims to raise awareness of the lifelong condition, PKU, and to support everyone living with the condition to ask policymakers to provide better access to specialist and frequent adult care.<\/p>\n We\u2019re working with patient groups across Europe to call for consistent provision of metabolic specialists, dieticians and psychological support for every adult with PKU in Europe \u2013 as set out by the 2017 European Guidelines for PKU1<\/sup>.<\/p>\n Save to share<\/a><\/p>\n <\/div>\n \n <\/div>\n <\/figure>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n
Living without the necessary tools is a daily reality for adults with PKU across Europe<\/h2>\n <\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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Care for adults with PKU varies considerably across Europe in terms of diagnosis, treatment, and lifelong management3<\/sup>.<\/h3>\n
Managing PKU throughout adulthood can be very difficult and is made more challenging without the right support services 4<\/sup>\n \n \n<\/h2>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t
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Report that adherence to a strict diet required ‘significant effort’\n<\/h4>\n \n <\/div>\n<\/div>\n\n
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Report relationship difficulties with friends, family and partners\n<\/h4>\n \n <\/div>\n<\/div>\n\n
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Experience social exclusion\n<\/h4>\n \n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
If you’re living with PKU you can find more patient support services here<\/a><\/h4>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
This needs to change<\/h2>\n
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References:\n<\/h4>\n\t\t\t\t\t\t
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