{"id":1026,"date":"2015-09-30T07:31:34","date_gmt":"2015-09-30T12:31:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1026"},"modified":"2015-09-30T07:31:34","modified_gmt":"2015-09-30T12:31:34","slug":"brad","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Brad"},"content":{"rendered":"

09\/30\/2015:<\/p>\n

Nom<\/strong>:\u00a0 Brad\u00a0 L'\u00e2ge<\/strong>: 51 yrs. old\"LGMD2B<\/a><\/p>\n

Pays<\/strong>: \u00c9tats-Unis<\/p>\n

LGMD Sous-type<\/strong>: LGMD2B\/Miyoshi Myopathy<\/p>\n

 <\/p>\n

\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>:<\/p>\n

I first started having symptoms at 18. But it wasn\u2019t until about 10 years later that a neurologist told me I had Miyoshi.\u00a0 Then I had to wait another 10 years for the gene to be discovered before there was a way to confirm that that was what I have.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/p>\n

I couldn\u2019t stand on my toes, initially just on one side.<\/p>\n

Avez-vous d'autres membres de votre famille atteints de LGMD ?<\/strong><\/p>\n

Non<\/p>\n

Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>:<\/p>\n

That there is a lot more planning involved in scheduling any activity.\u00a0 A lot of everyday activities (travelling, shopping, going to a restaurant) involve a lot more things that have to be paid attention to.<\/p>\n

Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/p>\n

In 2000 I put together a website about dysferlin (the gene for my LGMD subtype).\u00a0 I didn\u2019t know anything about web design, but I wanted other patients to have a source of information about the disease and what research was going on.\u00a0 Through that, I was contacted by the Jain family after one of their children was diagnosed\u2014they later started the Jain Foundation, which supports research on my subtype.\u00a0 In 2007 the Jain Foundation organized first research conference on dysferlin.\u00a0 I kept pinching myself the entire time thinking that this couldn\u2019t be real\u2014there was actually a conference dedicated to this disease!<\/p>\n

Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/p>\n

I think it has made me more considerate and aware of others.\u00a0 I was always very independent when I was young, but needing help with some things, and also wanting to work with others to find cures for LGMDs, has taught me the importance of asking for help when you need it, offering help when you can, and working together.<\/p>\n

Que voulez-vous que le monde sache sur le LGMD ?<\/strong>:<\/p>\n

First, that it exists.\u00a0 I think a lot of people have the idea that MD only affects young boys, or at least children.\u00a0 I did before I started having symptoms.\u00a0 I want them to know that there are many different types of MD, and that symptoms can start at any age.<\/p>\n

Secondly, I think society tends to view disability as a black and white thing.\u00a0 That is, one is either disabled and may need help, or they are completely fine and don\u2019t. \u00a0\u00a0But for a condition like LGMD where symptoms often progress slowly, when exactly does one become disabled?\u00a0 I think the way things are set up often discourages people who are able and who want to work from doing so, and from doing all they can with their lives<\/p>\n

I want other patients to know that they aren\u2019t alone.\u00a0 When I was in grad school, I was extremely worried about my MD (which wasn\u2019t really diagnosed), but I didn\u2019t feel like I could share that with anyone.\u00a0 Many years later, I met another patient who also has LGMD, who was in grad school at the same university at the same time as me!\u00a0 Even though LGMD is a rare disease, there are other people out there and it\u2019s good to connect with them.<\/p>\n

Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>:<\/p>\n

Either go ice skating or skiing.\u00a0 Before I started having symptoms I was a competitive figure skater, and it would be really nice to be able to do that again.\u00a0 I also did a lot of skiing when I was younger, and loved it.<\/p>\n

 <\/p>\n

Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire en vue d'une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

09\/30\/2015: Name:\u00a0 Brad\u00a0 Age: 51 yrs. old Country: United States […]<\/p>","protected":false},"author":1,"featured_media":1027,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,55,16],"class_list":["post-1026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Brad<\/title>\n<meta name=\"description\" content=\"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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