{"id":1315,"date":"2016-09-02T08:01:44","date_gmt":"2016-09-02T13:01:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1315"},"modified":"2016-09-02T08:01:44","modified_gmt":"2016-09-02T13:01:44","slug":"melanie-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/09\/02\/melanie-2\/","title":{"rendered":"OSOBA Z LGMD: Melanie"},"content":{"rendered":"

Wywiad z LGMD Spotlight -\u00a0<\/strong>09\/02\/2016<\/strong><\/p>\n

\u00a0<\/strong><\/p>\n

Nazwa<\/strong>: Melanie\u00a0 Wiek<\/strong>29 lat\"LGMD2i<\/a><\/p>\n

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

Podtyp LGMD<\/strong> : LGMD2i (typ heterozygotyczny)<\/p>\n

 <\/p>\n

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

Zdiagnozowano j\u0105 u mnie w wieku 4 lat podczas biopsji mi\u0119\u015bnia.<\/p>\n

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

Zawsze upada\u0142em, gdy pr\u00f3bowa\u0142em biega\u0107 i chodzi\u0107 po schodach. Skutkowa\u0142o to wieloma siniakami i bliznami! Ponadto nie mog\u0142em samodzielnie wsta\u0107 z pod\u0142ogi. Objawy te pojawi\u0142y si\u0119 ju\u017c w wieku oko\u0142o 2 lat.<\/p>\n

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

Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie cierpi\u0105c\u0105 na LGMD.<\/p>\n

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

Najwi\u0119kszym wyzwaniem jest sprawienie, aby ludzie zrozumieli, \u017ce nie jestem zbyt leniwy, aby wykonywa\u0107 codzienne czynno\u015bci, ale jestem zbyt s\u0142aby, aby wykonywa\u0107 je samodzielnie. Kolejnym wyzwaniem dla wielu z nas jest zaakceptowanie w\u00f3zka inwalidzkiego jako najlepszego przyjaciela!<\/p>\n

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

Jest zbyt wiele osi\u0105gni\u0119\u0107! Dobre \u017cycie z LGMD jest osi\u0105gni\u0119ciem samym w sobie! Na moim blogu (www.littlemissturtle.com<\/a>) Pisz\u0119 o wszystkich moich osi\u0105gni\u0119ciach i przygodach na k\u00f3\u0142kach.<\/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

Dorasta\u0142em z LGMD. To uczyni\u0142o mnie bardzo siln\u0105 osob\u0105. Radzenie sobie z post\u0119puj\u0105c\u0105 chorob\u0105, kt\u00f3ra powoduje os\u0142abienie i zanik mi\u0119\u015bni, przy zachowaniu pe\u0142nej \u015bwiadomo\u015bci, jest wymagaj\u0105cym wyzwaniem, kt\u00f3re doceniam ka\u017cdego dnia mojego \u017cycia! Niedawno przesta\u0142em pracowa\u0107, aby mie\u0107 wi\u0119cej czasu na robienie wszystkich rzeczy, kt\u00f3re kocham. Choroba LGMD nauczy\u0142a mnie podchodzi\u0107 do wszystkiego na luzie. Wi\u0119cej rado\u015bci, mniej zmartwie\u0144, pozytywne nastawienie i sp\u0119dzanie jak najwi\u0119kszej ilo\u015bci czasu z bliskimi. To m\u00f3j spos\u00f3b!<\/p>\n

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

LGMD jest rzadk\u0105 i podst\u0119pn\u0105 chorob\u0105. Nie mo\u017cna jej por\u00f3wna\u0107 do \u017cadnej innej choroby, takiej jak stwardnienie rozsiane (SM) itp. Wa\u017cne jest, aby w pe\u0142ni wys\u0142ucha\u0107 osoby cierpi\u0105cej na LGMD, gdy prosi ona o pomoc - aby unikn\u0105\u0107 wyrz\u0105dzenia jej krzywdy.<\/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

Wstawa\u0142am sama z \u0142\u00f3\u017cka, ubiera\u0142am si\u0119 i sz\u0142am na spacer mojego \u017cycia! Chodzi\u0142abym tak d\u0142ugo, jak nogi by mnie nios\u0142y.<\/p>\n

Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD Spotlight interview –\u00a009\/02\/2016 \u00a0 Name:\u00a0 Melanie\u00a0 Age:\u00a0 29 yrs. 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