{"id":538,"date":"2023-11-08T22:54:32","date_gmt":"2023-11-08T22:54:32","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/en-gb\/liveunlimited\/?page_id=538"},"modified":"2024-06-28T08:30:13","modified_gmt":"2024-06-28T08:30:13","slug":"eva","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/eva\/","title":{"rendered":"Eva"},"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

EVA\n \n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Sweden<\/p>\n

As is common for rare disease patients, Eva was misdiagnosed as a baby, a disease for which she received medication for several weeks \u2013 only to be told later that her diagnosis was incorrect and that in actuality she had a life-long inhibiting disease called PKU.<\/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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Back to all Video Stories<\/a><\/p>\n <\/div>\n

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\u201cMy first memory of PKU, I think is in kindergarten\u201d<\/h2>\n

\u201cI remember just noticing that I had a closer relationship with the lunch lady than any of the other kids \u2013 and I remember thinking, why am I the only one?\u201d<\/strong><\/p>\n

Even from a young age Eva recalls the feeling of being different from her peers, \u201cI felt uncomfortable sitting at the table, everyone was eating something and I was eating something that looked weird. Sometimes I got comments like \u2013 \u2018what is that? That looks like poop\u2019,\u201d<\/strong> from the other kids.<\/p>\n

One of the major symptoms associated with unmanaged PKU is brain damage and cognitive difficulties which can carry into adulthood if unaddressed. For this reason it can be difficult for patients to differentiate between the disease symptoms and general mental health.<\/p>\n

\u201cIt\u2019s hard because you never know\u2026 I\u2019ve had some difficulty with concentration, especially in school, and I will never know if that is because of PKU or if it\u2019s just who I am,\u201d <\/strong>says Eva.<\/p>\n

Despite having come to terms with her diagnosis, Eva has concerns about her future, particularly around her ambition to travel outside of Stockholm; \u201cthe scary part is I don\u2019t know what would happen [if I leave Stockholm] and it would depend where I go, but it\u2019s far from certain I\u2019d have the same [support] in another country, or even in another region within Sweden. I feel very trapped knowing that even if I moved a few miles away I wouldn\u2019t know what\u2019s possible.\u201d<\/p>\n

The difficulty of understanding and managing PKU, particularly through turbulent teenage years is something most PKU patients can relate to \u2013 particularly given the discrepancies and transition between child and adult care.<\/p>\n

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\u201cI had more regular contact when I was little, then we almost had a personal relationship with our doctors, I remember them very fondly. They\u2019re both retired now.\u201d<\/h3>\n

\u201cI 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 and I think that just shows that there\u2019s really no one to receive me, it felt like I was leaving one doctor, but there was no new doctor to help me.\u201d<\/em><\/p>\n <\/div>\n \n

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It\u2019s this current gap in the transition of care that Eva bases her advice for future PKU patients on; those going through the child to adult transition \u2013 and preparation is her message.<\/p>\n

\u201cWhen you\u2019re coming up to the ages of the teenage years, of maybe 15, 16, start preparing for the transition way ahead. Ask your doctors who\u2019s going to take care of me then and what\u2019s going to happen so they get that it\u2019s important to you and you still have support. I wasn\u2019t prepared, I didn\u2019t even know that I was going to change doctors.\u201d<\/strong><\/p>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n

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Although Eva has a good quality of life and makes the most of her opportunities, she is concerned about the future.<\/h3>\n

\u201cWe\u2019re going to get older and we\u2019re going to discover what happens, but because it\u2019s such a rare thing, I get that not many people are interested. But it feels unfair that just because I have a rare disease I\u2019m not given the same amount of help and support as other people.\u201d<\/em><\/p>\n

\u201cI think the biggest challenge is maybe accepting I have PKU, because it\u2019s so rare \u2013 but it did happen to me. It\u2019s something I think about from time to time; like, what are the odds? But, it happened.\u201d<\/em><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Antoine’s Story<\/a><\/p>\n <\/div>\n

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Lal’s Story<\/a><\/p>\n <\/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":"\nEva - BioMarin Live Unlimited PKU EN-GB<\/title>\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\/eva\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Eva - BioMarin Live Unlimited PKU EN-GB\" \/>\n<meta property=\"og:url\" content=\"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/eva\/\" \/>\n<meta property=\"og:site_name\" content=\"BioMarin Live Unlimited PKU EN-GB\" \/>\n<meta property=\"article:modified_time\" content=\"2024-06-28T08:30:13+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/eva\/\",\"url\":\"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/eva\/\",\"name\":\"Eva - 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