{"id":540,"date":"2023-11-08T22:54:57","date_gmt":"2023-11-08T22:54:57","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/en-gb\/liveunlimited\/?page_id=540"},"modified":"2024-05-15T10:48:58","modified_gmt":"2024-05-15T10:48:58","slug":"lal","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/lal\/","title":{"rendered":"Lal"},"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

LAL\n\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Turkey<\/p>\n

Growing up with PKU in Istanbul has generally been \u201clucky\u201d, Lal tells us. Although varied and vibrant, \u201clike a huge world within a small city\u201d, for PKU patients there is a lot of potential for connecting with patients and medical support.<\/p>\n\t\t\t\t\t\t\t\t\n

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A lot of patients across Turkey are not as fortunate<\/h2>\n

\u201cMost of the Turkish population lives in the East,\u201d Lal says. \u201c[For PKU patients there] there is not enough financial support and they don\u2019t have enough health services.\u201d<\/strong><\/p>\n

Although support is available when babies with PKU are born, a lot of patients tend to drop out of medical care later in life and they tend not to be followed-up with by their doctors, explains Lal.<\/p>\n

\u201cThere are approximately 10,000 PKU patients across Turkey and only 50 metabolic doctors to take care of them,\u201d Lal says. \u201cThat\u2019s a big issue \u2013 we have a lack of doctors and a lack of metabolic centres.\u201d<\/strong><\/p>\n

Lal manages her PKU through strict diet management, which her mother, Deniz, has helped her with throughout her life.<\/p>\n

\u201cMy very first memory of PKU was when I was four or five, and we were on vacation with my parents. We were eating dinner, and someone had ordered rice for me. Somehow, we learned that the rice included meat sauce, but it was too late. I remember my mum was really panicked. She was screaming and so scared.\u201d<\/strong><\/p>\n

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Our patient association would host summer camps with other patients but I didn\u2019t want to go because they affected me in a bad way.<\/h3>\n

“The patients were so negative, they hated their diets, they hated themselves. They would come to me and say, \u2018I have this chocolate, do you want to taste it?\u2019 They\u2019re off diet and they don\u2019t care.\u201d<\/em><\/p>\n

\u201cI can understand of course wanting to eat things you can\u2019t \u2013 but what I can\u2019t understand is how they can forget about the mental effects of eating protein, or just eating because they want to be accepted by their friends or just go to a concert and get drunk.\u201d<\/em><\/p>\n <\/div>\n \n

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Although Lal has lots of support from her friends, family, doctors and the PKU patient network, there are times when it can still get her down, particularly if her PHE levels are high.<\/p>\n

\u201cI have had problems with concentration, I just felt tired and didn\u2019t have the will to do something. I had this moment when my anger was really high. When your PHE levels are high you get stressed and become really angry \u2013 it really changes your emotions and concentration.\u201d<\/strong><\/p>\n

However, overall Lal knows that she\u2019s a stronger person because of her PKU. \u201cThe strength I have today is thanks to PKU because when I was born I learned how to deal with challenges. I learned how to love myself, how to accept myself, how to take care of myself.\u201d<\/strong><\/p>\n

Nowhere is this truer than when Lal is in the dance studio. When talking about theatre and dance, her face lights up.<\/p>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n

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“Theatre and stage will always be a part of my life because it\u2019s a really precious moment when you just give a part of yourself to the audience. Dance is something else for me, it helps me to push my limits.\u201d<\/h3>\n

< Watch Lal’s story<\/strong><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Eva’s Story<\/a><\/p>\n <\/div>\n

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Piroska’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":""},"class_list":["post-540","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nLal - 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\/lal\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lal - BioMarin Live Unlimited PKU EN-GB\" \/>\n<meta property=\"og:url\" content=\"https:\/\/pku.biomarin.com\/en-gb\/liveunlimited\/lal\/\" \/>\n<meta property=\"og:site_name\" content=\"BioMarin Live Unlimited PKU EN-GB\" \/>\n<meta property=\"article:modified_time\" content=\"2024-05-15T10:48:58+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\\\/lal\\\/\",\"url\":\"https:\\\/\\\/pku.biomarin.com\\\/en-gb\\\/liveunlimited\\\/lal\\\/\",\"name\":\"Lal - 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