{"id":598,"date":"2015-04-14T15:10:47","date_gmt":"2015-04-14T20:10:47","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=598"},"modified":"2015-04-14T15:10:47","modified_gmt":"2015-04-14T20:10:47","slug":"freddy","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/04\/14\/freddy\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Freddy"},"content":{"rendered":"

04\/14\/2015<\/p>\n

NOME<\/strong>:\u00a0 Freddy \u00a0\u00a0IDADE<\/strong>: 49 Yrs. Old\"LGMD2A<\/a><\/p>\n

PA\u00cdS<\/strong>:\u00a0 Denmark<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD2A - Calpainopatia<\/p>\n

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

COM QUE IDADE FOI DIAGNOSTICADO<\/strong>:<\/p>\n

I was initially diagnosed with LGMD at the age of 29 years old.\u00a0 Around my 34th<\/sup> \u00a0birthday I received confirmation of my LGMD2A diagnosis.<\/p>\n

QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS:<\/strong><\/p>\n

I had a stiff neck when walking and was having problems lifting objects up from the ground. My right arm could not bend. \u00a0I was also experiencing fatigue.<\/p>\n

TEM OUTROS FAMILIARES QUE SOFREM DE LGMD: <\/strong><\/p>\n

N\u00e3o, sou a \u00fanica pessoa da minha fam\u00edlia com este diagn\u00f3stico.<\/p>\n

QUAL \u00c9, NA SUA OPINI\u00c3O, O MAIOR DESAFIO DE VIVER COM A LGMD?<\/strong>:<\/p>\n

I struggle to have enough energy to do the things that I want and need to do during the day.\u00a0 I try to plan my day in advance so I know what and how to use my energy during the day. \u00a0Unexpected things or chores are sometimes a problem.<\/p>\n

The long winters are also a challenge.\u00a0 In the winter I stay indoors as much as possible. \u00a0I only go out when I really have to. \u00a0My son understands this, but is it not always nice for him that we cannot play outside or spend more time outdoors in the winter. \u00a0When there is frost or snow I stay indoor even more because I\u2019m afraid to fall.<\/p>\n

Because of the LGMD sometimes I seem to have a short temper\u2026?<\/p>\n

QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O<\/strong>:<\/p>\n

One of my greatest accomplishments is that I moved from Holland to Denmark 15 years ago. \u00a0\u00a0I have a nice wife and son who is \u00a07 years old (almost 8).\u00a0 I also have a job where I am able to work 20 hours a week. \u00a0\u00a0(Denmark is trying to help the disabled where they can.)<\/p>\n

COMO \u00c9 QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE \u00c9 HOJE?<\/strong><\/p>\n

I am still able to walk, and my doctor told me that I will be able to do that forever J, but sometimes I\u2019m a bit unstable and walking \u201cstrange\u201d.<\/p>\n

I have to plan my days, to plan my energy , if there is something different like an appointment I have to know it days in advance.\u00a0 Otherwise I take it as it comes, one day at the time.<\/p>\n

O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD<\/strong>:<\/p>\n

I want the world to know that the disease Limb Girdle Muscular Dystrophy (LGMD) exists and that it is a rare disease.\u00a0 The form of LGMD that I have \u2013 LGMD type 2A – is quite rare! \u00a0\u00a0In Denmark it is estimated that only 6% of LGMD patients are diagnosed with LGMD2A.<\/p>\n

SE A SUA LGMD PUDESSE SER \"CURADA\" AMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER<\/strong>:<\/p>\n

Running!\u00a0 It has been many years ago since I have been able to run or since I was stable in my walking.<\/p>\n

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

04\/14\/2015 NAME:\u00a0 Freddy \u00a0\u00a0AGE: 49 Yrs. 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