{"id":1463,"date":"2017-06-07T10:06:12","date_gmt":"2017-06-07T15:06:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1463"},"modified":"2017-06-07T10:06:12","modified_gmt":"2017-06-07T15:06:12","slug":"jill","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2017\/06\/07\/jill\/","title":{"rendered":"EINZELPERSON MIT LGMD: Jill"},"content":{"rendered":"

LGMD \"Spotlight Interview\"<\/strong><\/p>\n

NAME:<\/strong> Jill AGE: 42\"\"<\/a>
\nLAND<\/strong>: USA
\nLGMD Unter-Typ<\/strong>: autosomal dominant Emery-Dreifuss muscular dystrophy (LMNA mutation\/LGMD1B)<\/p>\n

IN WELCHEM ALTER WURDEN SIE DIAGNOSTIZIERT?<\/strong>:
\nI was diagnosed when I was 4 years old.<\/p>\n

WAS WAREN IHRE ERSTEN SYMPTOME?<\/strong>
\nI was slight at birth, and my aunts both recall thinking there was not enough fat and muscles on my bottom and legs. My early milestones were unremarkable; I was able to sit, crawl, walk, etc. at appropriate ages. As I entered pre-school, it was noted that I fell much more often than the other children, and I had difficulty keeping up with others. I remember having great difficulty remaining upright in a \u201cbouncy house\u201d at a carnival, and also I didn\u2019t enjoy bumper cars because I had difficulty with neck weakness.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN:<\/strong>
\nMy father and two brothers and one sister all have EDMD, but with a wide variety in severity. One sister is unaffected. It is suspected that my paternal grandmother and great-grandmother also inherited this disorder, but it was so mild they never knew this in their lifetime.<\/p>\n

WAS SIND F\u00dcR SIE DIE GR\u00d6SSTEN HERAUSFORDERUNGEN IM LEBEN MIT LGMD:<\/strong>
\nI get frustrated because I want to do the things someone my age should be able to do without significant difficulty. For example, keeping up with housework is very challenging, and I don\u2019t end up with the house looking the way I imagine it should after working hard.<\/p>\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT:<\/strong>
\nMy greatest accomplishment was uncovering my own diagnosis as a teenager and informing my father\u2019s cardiologist that our genetic disorder required implantation of a pacemaker. Perhaps this saved his life when he was only 44 years of age. It gave us the chance to love him for another 18 years.<\/p>\n

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND?<\/strong>
\nIt made me learn to rely on myself rather than looking to others to solve my problems. I learned quite early in life that if you have a very rare medical condition, you are going to have to become your own advocate. Also, having a muscle disease made me very dedicated to academic pursuits. I studied genetics as an undergraduate, and creative writing in graduate school. Without my achievements in higher education, I might struggle with uncovering my purpose in life.<\/p>\n

WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/strong>
\nIn terms of what I would want people to know about Emery-Dreifuss MD (EDMD), probably I would want people to know I\u2019m just the same as any other person on the inside. I feel the same hurts, have the same dreams, and most of all, just want to be included in all there is to experience in life. I have been happily married for nearly 12 years, and I\u2019ve raised a son to the age of 11, and most of all I would want people to understand that these life goals can be met by a person even if they are unable to walk.<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00c4RE DAS ERSTE, WAS SIE TUN W\u00dcRDEN?<\/strong>
\nI would want to advocate for EDMD to be included in the genetic testing offered to newborns. My greatest wish is that I don\u2019t want a future generation to go through the difficulties I went through, and the best time to intervene is at birth.<\/p>\n

Wenn Sie weitere \"LGMD Spotlight Interviews\" lesen oder sich f\u00fcr ein Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

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

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