{"id":1638,"date":"2017-12-04T15:59:19","date_gmt":"2017-12-04T21:59:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1638"},"modified":"2017-12-04T15:59:19","modified_gmt":"2017-12-04T21:59:19","slug":"deceena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/12\/04\/deceena\/","title":{"rendered":"OSOBA Z LGMD: Deceena"},"content":{"rendered":"

LGMD \"Wywiad w centrum uwagi\"<\/strong><\/span><\/p>\n

Nazwa<\/strong><\/span>:\u00a0 <\/span>Deceena\u00a0 \u00a0Wiek<\/strong>: 31 lat\"\"<\/a><\/span><\/p>\n

Kraj<\/strong>: USA<\/span><\/p>\n

Podtyp LGMD<\/strong>: LGMD2A - znana r\u00f3wnie\u017c jako kalpainopatia<\/span><\/p>\n

 <\/p>\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/span><\/p>\n

Zdiagnozowano mnie w wieku 29 lat.<\/span><\/p>\n

Jakie by\u0142y pierwsze objawy?<\/strong>:<\/span><\/p>\n

Pierwszym objawem by\u0142o os\u0142abienie mi\u0119\u015bni n\u00f3g. Nie by\u0142em w stanie chodzi\u0107 <\/span>po schodach jak normalna osoba, pocz\u0105wszy od 2008 roku po urodzeniu mojego drugiego dziecka. Lekarze uznali to po prostu za wynik porodu i doradzili mi, \u017cebym zacz\u0119\u0142a \u0107wiczy\u0107. Mia\u0142am zaledwie 22 lata i wiedzia\u0142am, \u017ce dzieje si\u0119 co\u015b wi\u0119cej. \u017ba\u0142uj\u0119 tylko, \u017ce lekarze nie potraktowali mnie powa\u017cniej. Chodzi\u0142am do wielu lekarzy i specjalist\u00f3w, kt\u00f3rzy twierdzili, \u017ce nic mi nie jest. W ko\u0144cu znalaz\u0142em holistycznego lekarza, kt\u00f3ry wypowiedzia\u0142 s\u0142owa \"O m\u00f3j Bo\u017ce, dlaczego nikt ci nie pom\u00f3g\u0142?\". Wys\u0142a\u0142 mnie na PT, a na mojej ostatniej wizycie <\/span>dzie\u0144 M\u00f3j PT zapyta\u0142 mnie, czy kto\u015b w mojej rodzinie ma dystrofi\u0119 mi\u0119\u015bniow\u0105? (Nie). Wspomnia\u0142 mi, \u017ce istniej\u0105 formy, kt\u00f3re s\u0105 recesywne i zasugerowa\u0142 mojemu lekarzowi, aby zacz\u0105\u0142 szuka\u0107 odpowiednich test\u00f3w i skierowa\u0144 na MD. By\u0142a to pierwsza osoba, kt\u00f3ra kiedykolwiek wspomnia\u0142a mi s\u0142owa \"dystrofia mi\u0119\u015bniowa\". Nast\u0119pnie znalaz\u0142em niesamowit\u0105 grup\u0119 na Facebooku, kt\u00f3ra pozwoli\u0142a mi publikowa\u0107 swoje filmy. Wkr\u00f3tce potem trafi\u0142em na badania genetyczne prowadzone przez Jain Foundation<\/span>, i by\u0142em w stanie spotka\u0107 si\u0119 z dr Jerrym Mendlem, co zako\u0144czy\u0142o si\u0119 ostateczn\u0105 diagnoz\u0105 LGMD2A. Proces od mojego nowego dostawcy<\/span>, od bada\u0144 genetycznych do diagnozy min\u0119\u0142y oko\u0142o 3 MIESI\u0104CE po wielu LATACH, kiedy m\u00f3wiono mi, \u017ce nic mi nie jest i \u017ce powinnam \u0107wiczy\u0107. Otrzyma\u0142em diagnoz\u0119 <\/span>na Moje najm\u0142odsze c\u00f3rki 1st<\/sup> urodziny. Dzie\u0144, kt\u00f3ry zawsze b\u0119d\u0119 pami\u0119ta\u0107....<\/span><\/p>\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD? <\/strong><\/span><\/p>\n

Nikt inny w mojej rodzinie nie choruje na LGMD.<\/span><\/p>\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/span><\/p>\n

Obecnie moim najwi\u0119kszym wyzwaniem jest wyt\u0142umaczenie moim dzieciom, \u017ce nie jestem w stanie wykonywa\u0107 pewnych czynno\u015bci, biega\u0107 i bawi\u0107 si\u0119 z nimi, a nawet ich wymienia\u0107; i wyja\u015bnienie dlaczego. Czasami bardzo trudno jest odpowiedzie\u0107 na ich pytania. Drugim najwi\u0119kszym wyzwaniem s\u0105 niegrzeczne komentarze ludzi na temat tego, \u017ce powinienem zachowa\u0107 parking dla os\u00f3b niepe\u0142nosprawnych. Mo\u017ce i wygl\u0105dam jak \"normalna\" osoba, ale mam trudno\u015bci z chodzeniem na d\u0142ugich dystansach i nie mog\u0119 ju\u017c wchodzi\u0107 po schodach lub kraw\u0119\u017cnikach bez pomocy mojego m\u0119\u017ca.<\/span><\/p>\n

Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/span><\/p>\n

Powiedzia\u0142bym, \u017ce moim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142oby nauczenie si\u0119 mi\u0142o\u015bci i wsp\u00f3\u0142czucia dla wszystkich. Nigdy nie zdawa\u0142em sobie sprawy z emocjonalnych wyzwa\u0144, przed jakimi staj\u0105 osoby niepe\u0142nosprawne. Wi\u0119kszo\u015b\u0107 my\u015bli, \u017ce to tylko fizyczne, ale tak nie jest. Znalaz\u0142em partnera, kt\u00f3ry zdecydowa\u0142 si\u0119 stan\u0105\u0107 obok mnie i po\u015blubi\u0107 mnie 9 dni p\u00f3\u017aniej. Odbyli\u015bmy bardzo szczer\u0105 i trudn\u0105 (dla mnie) rozmow\u0119 na temat tego, czy powinni\u015bmy kontynuowa\u0107, wiedz\u0105c, z jakimi trudno\u015bciami fizycznymi, emocjonalnymi i psychicznymi b\u0119dziemy musieli si\u0119 zmierzy\u0107 w obliczu tej okropnej choroby. M\u00f3g\u0142 odej\u015b\u0107, wiedz\u0105c, \u017ce cierpi\u0119 na post\u0119puj\u0105c\u0105 chorob\u0119 neurologiczn\u0105, ale on kocha bezwarunkowo i nauczy\u0142 mnie prawdziwego znaczenia bezwarunkowej mi\u0142o\u015bci i akceptacji. Nauczy\u0142 mnie kocha\u0107 g\u0142\u0119biej i zawsze, w ka\u017cdej sytuacji - nawet w sytuacjach, kt\u00f3re uwa\u017camy za straszne. Zbudowali\u015bmy pi\u0119kn\u0105 rodzin\u0119, kt\u00f3ra jest moim najwi\u0119kszym osi\u0105gni\u0119ciem. Mam nadziej\u0119, \u017ce nadal b\u0119dziemy dawa\u0107 przyk\u0142ad mi\u0142o\u015bci i wsp\u00f3\u0142czucia, aby nasze dzieci mog\u0142y to zobaczy\u0107 i, miejmy nadziej\u0119, \u017cy\u0107. Ten \u015bwiat by\u0142by lepszym miejscem <\/span>jest ludzie traktowali ludzi jak ludzi, a nie jak ich niepe\u0142nosprawno\u015b\u0107.<\/span><\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj: <\/strong><\/span><\/p>\n

Choroba LGMD nauczy\u0142a mnie, jak si\u0119 broni\u0107 i zabiera\u0107 g\u0142os. Musia\u0142am broni\u0107 siebie przez wiele lat, m\u00f3wi\u0105c lekarzom, \u017ce si\u0119 myl\u0105. Kto to robi? W\u0142a\u015bnie ta dziewczyna! To zainspirowa\u0142o mnie do stania si\u0119 g\u0142osem <\/span>dla innych. Z ca\u0142ego serca opowiadam si\u0119 za tymi, kt\u00f3rzy nie s\u0105 w stanie<\/span>, lub tych, kt\u00f3rzy mog\u0105 potrzebowa\u0107 pomocy. Patrz\u0119 na niepe\u0142nosprawno\u015b\u0107 jak na dar. Dano mi mo\u017cliwo\u015bci, kt\u00f3re pomog\u0142y mi zdefiniowa\u0107 i ukszta\u0142towa\u0107 moje obecne przekonania. Zawsze b\u0119d\u0119 zabiera\u0107 g\u0142os, nawet gdy jest to niewygodne i gdy nikt inny tego nie chce. Zawsze b\u0119d\u0119 zadawa\u0107 pytania moim lekarzom i nie przestan\u0119. Choroba LGMD zmieni\u0142a mnie w osob\u0119 o silnym charakterze i determinacji, kt\u00f3re mam dzisiaj.<\/span><\/p>\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/span><\/p>\n

Nie wiem nawet od czego zacz\u0105\u0107 w tej kwestii. Przede wszystkim, osoby cierpi\u0105ce na LGMD nie r\u00f3\u017cni\u0105 si\u0119 niczym od tych, kt\u00f3re tego nie maj\u0105. Nadal oddycham i nadal mam uczucia. Nadal kocham tak samo i nadal tak samo cierpi\u0119. Chc\u0119 by\u0107 szcz\u0119\u015bliwa i mie\u0107 takie same mo\u017cliwo\u015bci jak osoby bez choroby. Niczym si\u0119 nie r\u00f3\u017cni\u0119, mo\u017ce poza tym, \u017ce jestem troch\u0119 bardziej \u015bwiadoma tego, jak ludzie traktuj\u0105 innych.<\/span><\/p>\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/span><\/p>\n

Absolutnie pierwsz\u0105 rzecz\u0105, jak\u0105 bym zrobi\u0142, by\u0142oby podbiegni\u0119cie do moich dzieci, a nast\u0119pnie si\u0142owanie si\u0119 z nimi na pod\u0142odze, podskakiwanie z nimi i podrzucanie ich w powietrze. T\u0119skni\u0119 za tym bardziej, ni\u017c potrafi\u0119 wyrazi\u0107 s\u0142owami. Mog\u0142em to robi\u0107 z moimi starszymi dzie\u0107mi, kt\u00f3re maj\u0105 prawie 12 i 9 lat<\/span>, Ale nie by\u0142am w stanie tego zrobi\u0107 z m\u0142odsz\u0105 dw\u00f3jk\u0105, kt\u00f3ra ma 6 i prawie 3 lata. Potem wskakiwa\u0142am w ramiona mojego m\u0119\u017ca i po prostu zostawa\u0142am tam na chwil\u0119. Potem musia\u0142abym i\u015b\u0107 pobiega\u0107, d\u0142ugo biega\u0107. Bieganie by\u0142o moj\u0105 ulubion\u0105 aktywno\u015bci\u0105, kt\u00f3rej nie mog\u0142am uprawia\u0107 od wielu lat.<\/span><\/p>\n

 <\/p>\n

* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem<\/span>: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n

* * * Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD!<\/span><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Deceena\u00a0 \u00a0Age: 31 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1637,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1638","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Deceena - LGMD Awareness Foundation<\/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.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/12\/04\/deceena\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Deceena - 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