{"id":8593,"date":"2024-09-27T17:23:35","date_gmt":"2024-09-27T17:23:35","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8593"},"modified":"2024-09-27T17:25:03","modified_gmt":"2024-09-27T17:25:03","slug":"individual-with-lgmd-dilek","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2024\/09\/27\/individual-with-lgmd-dilek\/","title":{"rendered":"OSOBA Z LGMD: Dilek"},"content":{"rendered":"

\"\"<\/p>\n

Nazwa<\/strong>: Dilek<\/p>\n

Wiek<\/strong>: \u00a039<\/p>\n

Kraj<\/strong>: Turcja<\/p>\n

Podtyp LGMD<\/strong>: LGMD 2D \/ R3<\/p>\n

 <\/p>\n

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

Zdiagnozowano mnie w wieku 21 lat.<\/p>\n

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

Pocz\u0105tkowo zauwa\u017cy\u0142em, \u017ce mam trudno\u015bci z wchodzeniem po schodach.<\/p>\n

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

M\u00f3j brat ma 35 lat<\/p>\n

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

Nie mog\u0119 si\u0119 podnie\u015b\u0107, gdy upadn\u0119. Mog\u0119 upa\u015b\u0107 przy najmniejszym potkni\u0119ciu. Mam trudno\u015bci z podnoszeniem r\u0105k. Nie mog\u0119 wchodzi\u0107 ani schodzi\u0107 po schodach. Moje \u017cycie towarzyskie jest ograniczone.<\/p>\n

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

Moja psychika jest silna i patrz\u0119 na \u017cycie z nadziej\u0105. Walcz\u0119, by wspiera\u0107 wysi\u0142ki na rzecz leczenia. Poniewa\u017c jestem matk\u0105, \u017con\u0105 i pracownikiem o\u015bwiaty.<\/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><\/p>\n

Oczywi\u015bcie s\u0105 miejsca, w kt\u00f3rych ma to negatywny wp\u0142yw, moje \u017cycie towarzyskie mog\u0142oby by\u0107 bardziej aktywne i zat\u0142oczone. Niestety, nie mog\u0119 uczestniczy\u0107 w ka\u017cdym \u015brodowisku.<\/p>\n

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

Je\u015bli chodzi o dost\u0119pno\u015b\u0107, mam nadziej\u0119, \u017ce obszary publiczne (drogi, toalety, kawiarnie, restauracje itp.) b\u0119d\u0105 dla nas dost\u0119pne, \u017ce lekarze, naukowcy, stowarzyszenia i, co najwa\u017cniejsze, rz\u0105dy b\u0119d\u0105 wspiera\u0107 badania nad terapi\u0105 genow\u0105 i badania nad lekami oraz \u017ce zostan\u0105 dla nas znalezione trwa\u0142e rozwi\u0105zania.<\/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>?<\/p>\n

Mam wiele marze\u0144, takich jak p\u0142ywanie w morzu z moj\u0105 c\u00f3rk\u0105 bez strachu, wzi\u0119cie udzia\u0142u w kursie gry na instrumencie muzycznym, bieganie, granie w \u015bnie\u017cki i wiele innych. Chc\u0119 prze\u017cy\u0107 \u017cycie, kt\u00f3re musia\u0142em od\u0142o\u017cy\u0107 na p\u00f3\u017aniej.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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