{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"INDIVIDUO CON LGMD: Jillena"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD\n\"Intervista a fuoco\"<\/strong><\/p>\n\n\n\n

Nome<\/strong>: Jillena\n Et\u00e0<\/strong>: 32 anni<\/p>\n\n\n\n

Paese<\/strong>: Stati Uniti\nStati Uniti<\/p>\n\n\n\n

Sottotipo LGMD<\/strong>: LGMD2A - una forma di calpainopatia<\/p>\n\n\n\n

A CHE ET\u00c0 \u00c8 STATA FATTA LA DIAGNOSI <\/strong>:<\/p>\n\n\n\n

Mi \u00e8 stata diagnosticata la LGMD all'et\u00e0 di 21 anni.\nall'et\u00e0 di 21 anni. Poi ho ricevuto la conferma genetica\nconferma del mio sottotipo LGMD2A un paio di mesi fa.<\/p>\n\n\n\n

QUALI SONO STATI I PRIMI SINTOMI <\/strong>:<\/p>\n\n\n\n

Dopo aver avuto il mio secondo figlio, ho cominciato a notare che\nche le scale diventavano difficili per me. In effetti, le salivo strisciando. I\nscoliosi, quindi ho attribuito la mia difficolt\u00e0 a fare le scale alla scoliosi.\nPoi, per\u00f2, ho avuto il secondo figlio e non riuscivo a sollevare la gamba sul marciapiede.\nfacilmente. Inoltre, sono sempre stata magra e\nnon ho mai saputo il perch\u00e9. Mia madre temeva che ci fosse qualcosa che non andava e mi convinse a rivolgermi a un medico.\nmedico.<\/p>\n\n\n\n

HA ALTRI FAMILIARI CHE\nHANNO LA LGMD:<\/strong><\/p>\n\n\n\n

A nessun altro nella mia famiglia \u00e8 stata diagnosticata la LGMD, ma mia madre aveva un fratello che viveva con una disabilit\u00e0 fisica. Crediamo che avesse la distrofia muscolare di Duchenne.<\/p>\n\n\n\n

QUALI SONO, SECONDO LEI, LE MAGGIORI\nSFIDE NEL VIVERE CON LA LGMD <\/strong>:<\/p>\n\n\n\n

La prima cosa \u00e8 la lotta che la mia famiglia deve affrontare, cosa che non farebbe se non avessi questa malattia.\nse non avessi questa malattia. La seconda \u00e8 il fatto che non posso pi\u00f9 andare, andare, andare come prima.\ncome facevo prima. Le mie braccia e le mie gambe sono pi\u00f9 deboli e questo mi rende faticoso fare molte cose.<\/p>\n\n\n\n

QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO <\/strong>:<\/p>\n\n\n\n

Il mio pi\u00f9 grande risultato \u00e8 il mio pi\u00f9 recente cambiamento di atteggiamento. I\nmi sono resa conto che essere negativa nei confronti della mia malattia e del mio destino non aiutava nessuno. Non solo ho deciso di vivere la vita guardando\nun altro paio di occhiali, ma ho anche deciso di condividere questi occhiali con il mondo\nocchiali con il mondo attraverso il mio percorso di vita su una pagina Facebook che ho creato.<\/p>\n\n\n\n

COME LA LGMD L'HA INFLUENZATA NEL\nNEL DIVENTARE LA PERSONA CHE SIETE OGGI:<\/strong><\/p>\n\n\n\n

Una volta accettato che avevo questa malattia\ne che non dovevo essere infelice, ho creato una pagina su Facebook. Ho iniziato a dare consigli su come essere\npositivo. Da allora \u00e8 diventato molto di pi\u00f9. Ora ho cos\u00ec tanti amici su Facebook\nche sono diventati un fantastico sistema di supporto. Inoltre, ho condiviso la mia storia durante un discorso per la raccolta fondi Shamrock\nper la raccolta fondi per la MDA. Sono sbocciata\nin una persona che vuole solo che tutti vedano il loro valore! Dieci anni fa, non mi importava\nnon mi importava di me stessa, figuriamoci di qualcun altro.<\/p>\n\n\n\n

COSA VOLETE CHE IL MONDO SAPPIA\nSULLA LGMD <\/strong>:<\/p>\n\n\n\n

Voglio che il mondo sappia che la LGMD \u00e8 una malattia estremamente difficile da affrontare, per la maggior parte\nda affrontare, per la maggior parte, perch\u00e9 ti toglie l'indipendenza. Con l'avanzare dell'et\u00e0\ninvecchiare, i muscoli si indeboliscono e la mobilit\u00e0 diminuisce. Questo \u00e8 difficile,\nsoprattutto quando si hanno tre figli da portare in giro.<\/p>\n\n\n\n

SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI\nDOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTI FARE? <\/strong>:<\/p>\n\n\n\n

Vorrei fare un'escursione\nsulle montagne del Colorado con la mia famiglia!<\/p>\n\n\n\n

* * * Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web all'indirizzo https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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