{"id":1651,"date":"2018-01-08T10:22:50","date_gmt":"2018-01-08T16:22:50","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1651"},"modified":"2018-01-08T10:22:50","modified_gmt":"2018-01-08T16:22:50","slug":"jill-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2018\/01\/08\/jill-2\/","title":{"rendered":"INDIVIDUO CON LGMD: Jill"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD Spotlight Entrevista<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Nombre<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0\u00a0<strong>Edad<\/strong>: 33 a\u00f1os<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/01\/LGMD2i-Jill-W.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1650 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/01\/LGMD2i-Jill-W-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Pa\u00eds<\/strong>: \u00a0\u00a0\u00a0United States<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Subtipo LGMD<\/strong>:\u00a0\u00a0 \u00a0LGMD2i<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">I was diagnosed at the age of 27.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">In elementary school, I was always the last child to cross the finish line in <\/span>gym<span style=\"color: #000000;\">. I also remember having to sit out of school activities due to painful leg cramps. However, I was on the dance team and had a <\/span>super normal<span style=\"color: #000000;\"> childhood. After the birth of my first child in 2008, at age 23, I started presenting to the ER off and on with fatigue and pain. I remember telling my husband, \u201cThere\u2019s something wrong with me and someday I will figure out what it is.\u201d After the birth of my second daughter in 2010, I struggled with the physicality of having a toddler and a newborn. I was no longer able to climb a flight of stairs without great effort. I still thought \u201cmaybe this is just what tired moms feel like.\u201d Then in 2011, I went into rhabdomyolysis after catching a virus and spiking a fever. I went to the doctor with severe weakness and my CPK was 11,000. That finally led us down the right path and a diagnosis of LGMD2I was uncovered. Like many of you, it was a long road to diagnosis.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">No, I am homozygous recessive, so both of my parents were carriers. Thankfully, my brother and sister are unaffected.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">My girls were babies when I was diagnosed. A year later my husband was diagnosed with brain cancer. I feared that I wouldn\u2019t be able to care for my family. I spent many hours worrying about what was going to happen to us. I try to stay in the moment and enjoy the good times. It can be challenging to keep my \u201chead in the game\u201d and not anticipate my decline or let frustration and pain put me <\/span>to<span style=\"color: #000000;\"> bed. However, I am here, today. My husband is here, today. My kids are amazing and resilient. So, I remain thankful and we carry on.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">My greatest personal accomplishment is my happiness. I\u2019ve worked really hard to be happy, despite our challenges. I\u2019m really proud of that.\u00a0 It\u2019s a choice that I try to make every day.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">I do feel that I am living a more meaningful life after diagnosis. I love my people more intensely. I\u2019ve learned to slow down, because I have to, and that isn\u2019t a bad way to do life. I\u2019m also thankful for the opportunity to understand and have empathy for those with chronic disease, pain, grief\u2026 all of those invisible diseases that can so easily be misinterpreted as laziness or lack of effort. I see you and I am sorry it is hard.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">I want the world to know that LGMD is a genetically inherited disease and not one of \u201cnutritional deficiency\u201d or a result of not going to the gym. This isn\u2019t a disease that people choose. It is progressive and there is no cure. Although staying positive and remaining active will help, it will not stop the progression. In my mind, the best thing to say to someone with LGMD is, \u201cI know it\u2019s hard and you are doing such a good job.\u201d It would be so wonderful to find a treatment or a cure in the future. It\u2019s good to remain hopeful.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Give my girls piggyback rides to school, throw a huge party, and go on a family bike ride around our favorite lake.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web. <\/span>en <span style=\"color: #000000;\"><a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">* Por favor, dale al LIKE, COMENTA y COMPARTE este post para ayudar a concienciar sobre la LGMD.<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD Spotlight Interview Name:\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1650,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-1651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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