{"id":662,"date":"2024-01-08T14:54:04","date_gmt":"2024-01-08T13:54:04","guid":{"rendered":"https:\/\/www.zeozoe.sk\/?p=662"},"modified":"2024-11-21T12:53:15","modified_gmt":"2024-11-21T11:53:15","slug":"anjelska-tamarka","status":"publish","type":"post","link":"https:\/\/www.zeozoe.sk\/en\/2024\/01\/08\/anjelska-tamarka\/","title":{"rendered":"Anjelsk\u00e1 Tamarka"},"content":{"rendered":"
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Anjelsk\u00e1 Tamarka<\/h2>\n

Anjelsk\u00e1 Tamarka je\u00a0ob\u010dianske zdru\u017eenie\u00a0<\/a>zalo\u017een\u00e9 rodi\u010dmi malej Tamarky, ktor\u00e1 trp\u00ed ojedinel\u00fdm genetick\u00fdm ochoren\u00edm zn\u00e1mym ako Angelmanov syndr\u00f3m.<\/p>\n

Tamarka je kr\u00e1sne diev\u010datko obklopen\u00e9 rodinou, ktor\u00e1 ju nadov\u0161etko miluje a chce pre \u0148u to najlep\u0161ie. To najlep\u0161ie pre \u0148u moment\u00e1lne predstavuj\u00fa r\u00f4zne terapie, ktor\u00e9 Tamarke nesmierne pom\u00e1haj\u00fa.\u00a0ZEOZOE\u00ae<\/sup><\/strong>\u00a0podporuje Anjelsk\u00fa Tamarku pr\u00edspevkom z ka\u017ed\u00e9ho zak\u00fapen\u00e9ho bal\u00ed\u010dka s pr\u00edrodn\u00fdmi zubn\u00fdmi tabletami \u010di pr\u00e1\u0161kom, ktor\u00e9 m\u00f4\u017eete zak\u00fapi\u0165 v na\u0161om\u00a0eshope<\/a>. A vedeli ste, \u017ee aj Tamarke sa p\u00e1\u010dia na\u0161e dent\u00e1lne produkty? Pozrite si ako ve\u013emi\u00a0v na\u0161om videu<\/a>. \ud83d\ude42<\/p>\n

Okrem toho m\u00f4\u017eete Tamarku podpori\u0165 priamo na \u00fa\u010det: SK62 0900 0000 0051 6026 7452<\/p>\n

O Tamarke<\/strong><\/p>\n

23. febru\u00e1ra 2017 pri\u0161la na svet na\u0161a dc\u00e9rka Tamarka. Cel\u00e9 bezprobl\u00e9mov\u00e9 tehotenstvo sme sa te\u0161ili na de\u0148, ke\u010f ju z nemocnice prinesieme k star\u0161ej sestri\u010dke Nelke a vytvor\u00edme z nich tak par\u0165\u00e1\u010dky na cel\u00fd \u017eivot. Po\u010diato\u010dn\u00fa rodinn\u00fa idylku v\u0161ak ve\u013emi r\u00fdchlo vystriedali pochybnosti, \u010di je s na\u0161im najmen\u0161\u00edm anjelikom v\u0161etko v poriadku. Tamarka bola od narodenia ve\u013emi pokojn\u00e1 a k okolit\u00e9mu svetu priam nev\u0161\u00edmav\u00e1. Spo\u010diatku sme si mysleli, \u017ee ide len o ak\u00fasi lenivos\u0165, no postupom \u010dasu sme si za\u010dali uvedomova\u0165 jej v\u00fdrazn\u00e9 zaost\u00e1vanie za deti\u010dkami v podobnom veku. V \u0161iestich mesiacoch nedok\u00e1zala sama sedie\u0165 ani sa plazi\u0165. Ako uk\u00e1zalo neurologick\u00e9 vy\u0161etrenie, d\u00f4vodom bola hypot\u00f3nia a centr\u00e1lna tonusov\u00e1 porucha. Po tomto zisten\u00ed sme s Tamarkou absolvovali prv\u00fd rehabilita\u010dn\u00fd pohyb, na ktorom sme sa nau\u010dili cvi\u010di\u0165 Vojtovu met\u00f3du. Napriek dennodenn\u00e9mu cvi\u010deniu sa n\u00e1m Tamarku st\u00e1le nedarilo rozchodi\u0165, a tak padlo rozhodnutie vysk\u00fa\u0161a\u0165 pobyt v pie\u0161\u0165anskom medic\u00ednskom centre. Po desiatich d\u0148och v centre Adeli na\u0161a dc\u00e9rka o\u017eila a kone\u010dne sa za\u010dala zauj\u00edma\u0165 o okolit\u00fd svet. Na druhom pobyte, ktor\u00fd absolvovala v lete, poslu\u0161ne spolupracovala a pomaly napredovala v ovl\u00e1dan\u00ed ru\u010di\u010diek, krku a chrb\u00e1tika, ktor\u00e9 ju kv\u00f4li hypot\u00f3nii ve\u013emi neposl\u00fachali. V auguste sme sa na genetickom oddelen\u00ed dozvedeli nielen p\u00f4vodcu hypot\u00f3nie, ale tie\u017e Tamarkinho psychomotorick\u00e9ho zaost\u00e1vania. Diagn\u00f3za znela Angelmanov syndr\u00f3m, vz\u00e1cne neurologicko \u2013 genetick\u00e9 ochorenie, ktor\u00fdm trp\u00ed len nieko\u013eko det\u00ed na Slovensku a ned\u00e1 sa lie\u010di\u0165. Ch\u00fdbaj\u00faca \u010das\u0165 p\u00e4tn\u00e1steho chromoz\u00f3mu sp\u00f4sobuje spom\u00ednan\u00e9 psychomotorick\u00e9 zaost\u00e1vanie, probl\u00e9my s koordin\u00e1ciou, strabizmus a tie\u017e epilepsiu. Deti s Angelmanov\u00fdm syndr\u00f3mom nerozpr\u00e1vaj\u00fa, s\u00fa schopn\u00e9 nau\u010di\u0165 sa len p\u00e1r slov, a s\u00fa odk\u00e1zan\u00e9 na celo\u017eivotn\u00fa opateru. Napriek prvotn\u00e9mu \u0161oku, sme boli radi, \u017ee kone\u010dne vieme, \u010do na\u0161ej dc\u00e9rke v skuto\u010dnosti je. Len konkretizovan\u00edm jej zdravotn\u00e9ho probl\u00e9mu jej toti\u017e m\u00f4\u017eeme poskytn\u00fa\u0165 rehabilit\u00e1cie a terapie, ktor\u00e9 jej pom\u00e1haj\u00fa napredova\u0165. Cvi\u010d\u00edme s \u0148ou dvakr\u00e1t denne bobath koncept, rob\u00edme stimul\u00e1ciu tv\u00e1rov\u00fdch svalov, absolvujeme canisterapie, muzikoterapie, rehabilit\u00e1cie v centre Adeli a tie\u017e chod\u00edme na prech\u00e1dzky do parku. Hoci je tak\u00e1to starostlivos\u0165 n\u00e1ro\u010dn\u00e1, vidite\u013en\u00e9 pokroky, ktor\u00e9 na\u0161a Tamarka rob\u00ed, s\u00fa na\u0161im najv\u00e4\u010d\u0161\u00edm zados\u0165u\u010dinen\u00edm.<\/em><\/p>\n

Angelmanov syndr\u00f3m<\/strong><\/p>\n

Angelmanov syndr\u00f3m (AS, anglicky happy puppet syndrome) je ochorenie, ktor\u00e9 je sp\u00f4soben\u00e1 tzv. mikrodel\u00e9ciou chromoz\u00f3mu. Mikrodel\u00e9cia znamen\u00e1 stratu ve\u013emi mal\u00e9ho \u00faseku v ur\u010ditom mieste na chromoz\u00f3me. V tomto pr\u00edpade ide o chromoz\u00f3m 15 a jeho dlh\u00e9 ramienko. Je to geneticky podmienen\u00e9 ochorenie, ktor\u00e9 sa vyskytuje rovnako u chlapcov ako u diev\u010dat. Bolo prv\u00fdkr\u00e1t v literat\u00fare op\u00edsan\u00e9 v roku 1965 anglick\u00fdm lek\u00e1rom doktorom Angelmanom.<\/p>\n

Zmeny, ktor\u00e9 sp\u00f4sobuj\u00fa Angelmanov syndr\u00f3m vznikaj\u00fa n\u00e1hodne de novo, len v mal\u00fdch percent\u00e1ch s\u00fa tieto poruchy zdeden\u00e9. Frekvencia v\u00fdskytu Angelmanovho syndr\u00f3mu v popul\u00e1cii je pribli\u017ene 1\/16 000.<\/p>\n

Pr\u00ed\u010diny jeho vzniku ve\u013emi \u00fazko koreluj\u00fa s tzv. Prader-Williho syndr\u00f3mom. Obaja sa navonok prejavuj\u00fa inak, ale pr\u00e1ve \u00fasek DNA, ktor\u00fd v chromoz\u00f3me ch\u00fdba je rovnak\u00fd u oboch. O tom, ktor\u00fdm syndr\u00f3mom bude \u010dlovek trpie\u0165, rozhoduje tzv. Gen\u00f3mov\u00fd imprinting (miera vyjadrenia niektor\u00e9ho z g\u00e9nov z\u00e1vis\u00ed na rodi\u010doch).<\/p>\n

Diagnostika: diagn\u00f3zu mo\u017eno stanovi\u0165 na z\u00e1klade genetick\u00e9ho vy\u0161etrenia, ktor\u00e9 preuk\u00e1\u017ee ch\u00fdbanie (del\u00e9ciu) na 15 chromoz\u00f3me.<\/p>\n

Lie\u010dba: je len symptomatick\u00e1 a \u013eudia s t\u00fdmto syndr\u00f3mom si vy\u017eaduj\u00fa celo\u017eivotn\u00fa asistenciu.<\/p>\n

Prejavy: m\u00e1lo rozvinut\u00e1 re\u010d \u2013 iba minimum slov, sk\u00f4r neverb\u00e1lny prejav, ment\u00e1lne zaost\u00e1vanie, motorick\u00e9 probl\u00e9my \u2013 pripom\u00ednaj\u00faci pohyby b\u00e1biky, bezd\u00f4vodn\u00e9 z\u00e1chvaty smiechu, porucha pozornosti, hypot\u00f3nia \u2013 zn\u00ed\u017een\u00e9 svalov\u00e9 nap\u00e4tie, mikrocef\u00e1lia \u2013 \u201cmal\u00e1 hlava\u201d, abnorm\u00e1lne EEG (vy\u0161etrenie mozgu), \u0161k\u00falenie, poruchy preh\u013atacieho reflexu, splo\u0161ten\u00e9 z\u00e1hlavie hlavi\u010dky, hyperaktivita, epileptick\u00e9 z\u00e1chvaty, poruchy sp\u00e1nku.<\/p>\n\t<\/div>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t

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VEG\u00c1NSKE ZLO\u017dENIE<\/h3><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t
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PRIRODZEN\u00c9 BIELENIE<\/h3><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t
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NETESTOVAN\u00c9 NA ZVIERAT\u00c1CH<\/h3><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Anjelsk\u00e1 Tamarka Anjelsk\u00e1 Tamarka je\u00a0ob\u010dianske zdru\u017eenie\u00a0zalo\u017een\u00e9 rodi\u010dmi malej Tamarky, ktor\u00e1 trp\u00ed ojedinel\u00fdm genetick\u00fdm ochoren\u00edm zn\u00e1mym ako Angelmanov syndr\u00f3m. Tamarka je kr\u00e1sne diev\u010datko obklopen\u00e9 rodinou, ktor\u00e1 ju nadov\u0161etko miluje a chce...","protected":false},"author":1,"featured_media":663,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[41],"tags":[],"class_list":{"0":"post-662","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-zeozoe"},"yoast_head":"\nAnjelsk\u00e1 Tamarka - ZEOZOE\u00ae<\/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:\/\/www.zeozoe.sk\/en\/2024\/01\/08\/anjelska-tamarka\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Anjelsk\u00e1 Tamarka\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.zeozoe.sk\/en\/2024\/01\/08\/anjelska-tamarka\/\" \/>\n<meta property=\"og:site_name\" content=\"ZEOZOE\u00ae\" \/>\n<meta property=\"article:published_time\" content=\"2024-01-08T13:54:04+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-11-21T11:53:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.zeozoe.sk\/wp-content\/uploads\/2024\/07\/anjelska_tamarka_zeozoe.webp\" \/>\n\t<meta property=\"og:image:width\" content=\"1280\" \/>\n\t<meta property=\"og:image:height\" content=\"656\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/webp\" \/>\n<meta name=\"author\" content=\"zeozoe\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"zeozoe\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.zeozoe.sk\/2024\/01\/08\/anjelska-tamarka\/\",\"url\":\"https:\/\/www.zeozoe.sk\/2024\/01\/08\/anjelska-tamarka\/\",\"name\":\"Anjelsk\u00e1 Tamarka - 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